October 2020 – Just another day

Waking up, as normal, at 6 am my body was on autopilot. I’ve been tinkering with my bedtime routine and sleeping patterns and I’ve found that I only need 6 hours each night to wake up fresh and ready for the day. It’s winter and bitterly cold in the early hours, and the sun hasn’t had a chance to penetrate the fog outside. I put on my chocolate velour dressing gown and my fake UGGs and made my way downstairs to make the customary bullet coffee.

While I wait for the kettle to boil, I put in my headphones and start my playlist of morning motivational music; it starts with Above Inspiration’s Connect with God followed by Matthew McConaughey’s Speech That Broke the Internet. As I listen to the husky Texan voice ringing in my ears I felt a sharp, stabbing pain in my lower abdomen. It hit me with such force it brought me to down to my knees on the cold kitchen floor. The pain only lasted seconds and as soon as it came the sooner it passed. I managed to get back on my feet and shake off the residual pain followed by a little jog on the spot and finished making my cup of coffee.

Throughout the month I noticed that I struggled for a number 2 but the pains in my lower abdomen hadn’t returned. Maybe I had been overindulging, Eat Out to Help Out had put pounds on my waistline and I continued ‘Helping Out’ long after the scheme had finished.

So, out came the Bullet blender and off went the Just Eat notifications. Deleting the app was too much of an effort to reinstall later because let’s face it, I was bound to have a cheat day here and there.

Little did I know that the stabbing pains and change in bowel movement were signs of bowel cancer.

Nov – Dec 2020 – Christmas

Working from home certainly has its pleasures! Rolling out of bed and not having to check the traffic reports. Half dressed in a crisp white shirt and fleece jogging bottoms underneath; well away from the gaze of the camera. I’ve found the perfect angle for any video calls with the camera pointing at the corner of the room where the large flat-screen TV is, facing the door hiding the bed and the mirror. The company have been so kind to allow us to collect our equipment from the workplace so we have the same set-up as we would do if we were in the office. I have a large corner desk with 2 monitors and a docking system for my Dell laptop. I’ve used some of my self-help books to prop up my laptop as a third screen; self-help just keeps giving. I have a wireless keyboard and mouse and they’ve even given me a nice office chair. My desk is littered with lego figures given to me by my son, he has ADHD and lego is like therapy for him and it’s his pride and joy. There’s Jaffar from Aladon to the Mandalorian from Star Wars, he even made me into a lego figure.

Work has always been my therapy. I was finally able to see myself on a long-term career plan working my way up the ladder to help my company internationally. It’s were I escape my mundane life and can become someone that I’m otherwise not, because I’ve always felt I was living a double life. I had a version for my asian family and friends and another for my majority white colleagues. At work I was able to speak in a way which came across as confident and competent without coming across as cocky. I would over-prenounciate words for effect and walk with a swagger. I was flirtatious but respectful and I could use humour to diffuse any situation without causing offence. I called it my Les Brown voice. In my Asian family, all of the above would is considered a sin. I walked with my head down gazing to the floor and tip-toeing around to avoid aunties and uncles. I was careful of what I said and it felt like I was walking on eggshells. I could still be humorous by challenging political correctness and cheap gags about what it would be like if Boris Johnson was Pakistani and the uncanny resemblance of our family and monarchy and the devastating effect the west has had on the middle east. All the while avoiding talking about myself at any time. I call this my Paul Chowdhry voice. But, I’ve always felt that I was too white for Asians and not white enough for my peers.

During the run-up to Christmas, my appetite has changed due to feeling so constipated. It was ruining my quality of life. I felt weak and tired all the time and I struggled to sleep because of it. I decided to go on a high-fibre diet to help with my bowel movement and try to rid this tiredness by consuming a vast amount of coffee. None of it was working and the stabbing pains are back and becoming more frequent.

By Christmas my lower back is aching and my lower abdomen is in constant pain. A dull ache has taken over from the stabbing pains and I can feel a lump on the inside of the left-hand side of my lower abdomen. I feel like Joey, from Friends when he had a hernia, I’m constantly pressing on the lump, which can only be felt internally.

My family and friends notice that I’m walking differently and sitting in an awkward position, constantly pressing on my lower abdomen. They also noticed I’ve lost weight and I’m not eating much. Everyone is encouraging me to see my doctor and promise them that I’ll call them in the new year.

Jan 2021 – Feb 2021 – My wold shattered

My Father falls ill, Covid.

He had a number of health issues including, angina, kidney failure and blood flow issues. He took the advice from the Government and isolated himself and followed the rules but, for some unfortunate reason, he caught the Coronavirus and after experiencing difficulty breathing he was admitted to hospital.

He spent his entire time in the Covid ward which meant no one could visit. The only way of communicating with him was either through calling his phone if he or the Nurses had remembered to charge it or face time using the ward’s iPad which was of course in high demand.

There were days we were told he was fine, sat up in his chair having dinner making conversations with the Nurses and other days where he was being fed oxygen and couldn’t speak to anyone.

My Father had a number of scares in recent years and even when no one had faith or lacked it, he managed to push through and I honestly thought this was another one of them. Oh, how wrong was I! Dad caught pneumonia and he went downhill very quickly.

The call came on the night of 1st February 2021 to come and say your goodbye’s and on the morning of 2nd February 2021, my father passed away.

My younger brother came down from Bradford to be with the family since Dad had been admitted into the hospital to support the family and took ownership of arranging the funeral which in Covid times was extremely difficult.  It was also the time I recognised the important people in my life and how I had neglected them for so many months and years, my family!

Fair to say my health issues were of no concern during that time but I did feel it important to pick up with haste after the burial. The support of my partner was truly inspirational and without her, I do not know where I would be today as the loss of my father had hit me so heavily.

I went to see my GP practice and told the Doctor that my Father had passed away and I had not been well since October of last year. The Doctor had said it was constipation mainly due to stress and could not feel a lump externally. She prescribed a crate worth of laxatives which I had to consume over the next 4 weeks and if nothing had changed to come back to be reassessed.

The laxatives did help ease the flow of my bowels but the lump started to feel bigger.

March 2021 – Mis-diagnosed IBS

I’m back at my Gp’s surgery having finished the course of laxatives. I’m in more pain, the lump feels bigger and I’m experiencing stomach cramps. I’m sitting with a different Doctor this time who tells me I have IBS (Irritable Bowel Syndrome) and I need to look carefully at my diet. He recommends researching the FODMAP diet and prescribes Buscopan IBS Relief.

I got home and started Googling the FODMAP diet, FODMAP diet stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides And Polyols. The idea is to restrict certain food types such as dairy, wheat, beans and lentils and to avoid certain fruit and vegetables.

I’ve done something similar with the 10-Day Detox Diet by Dr Hyman so I was already avoiding most of what was recommended.

After removing all the suggested food types for around 4 weeks you slowly reintroduce food groups, one by one, and by process of elimination, you should figure out for yourself which foods are causing you any discomfort.

I gave it two weeks as the pains were getting stronger and stronger and I’m struggling for a number 2 (poop) even with the laxatives. Yes, the cramps have lessened but everything else still exists. And, having done some research on IBS, I discovered, there are no records of a positive IBS laboratory test or otherwise, it is, therefore, a GP’s educated assumption based on symptoms alone as to whether someone has IBS or not. From the research, I conducted, also doesn’t mention anything about a lump in my colon. So I insisted on a blood test or whatever can be offered to find out more of what is going on with my intestines as a process of elimination. I had the feeling that I was being thrown medication in the hope that something sticks.

The Doctor is hesitant as he believes strongly that it is IBS but does agree to a blood test. I waste no time and walk over the road to the QE2 Hospital, Welwyn Garden City, the Nurse tells me it normally takes five days for the results and my GP will be in contact.

Sunday morning, just two days later, I have a voicemail from the Doctor asking me to call in as soon as possible. I call back and I’m asked if I have suffered a cold or flu as my inflammation markers are high. I haven’t suffered or caught the flu or cold. He asked to do the test once more, just to make sure. So, back to the QE2 for more blood to be taken.

Again, 2 days later, the Doctor called to say the results are the same and he would speak to a Specialist in Lister Hospital, Stevenage (the larger, main hospital) for advice and get back to me. He calls on the same day and asks me to admit myself to Lister hospital as an emergency day patient where they will be able to carry out more tests and where a Specialist will be able to attend. Meanwhile, he asks me for a stool sample to help with the investigation.

I’m told to attend the Emergency department which I go with haste to waste no more time. Bloods are taken, again, and the conclusion, after 4 hours wait, is that I do not have IBS and I would need a colonoscopy to find out more.

Fortunately, I have private medical insurance, as part of the benefits I receive from work. I called them to take over the case and I’m booked in for early May at the Spire hospital, Harpenden.

May 2021 – Private medical care

I’ve been referred to the Spire hospital, Harpenden where I’m met by a skinny, lanky, very excited Consultant by the name of Dr King. He invites me into his office and as he sits he’s looking through pieces of paper from front to back, back to front and then he slams his hands down onto the desk and looks at me square in the eye to say ‘you poor sod!’ and bursts into laughter. I laugh with him because I know that I’ve been in discomfort for some time but it appeared to me that I should know more of what is going on with me. Fortunately, he tells me what I have missed. He explains that the stool samples hold the key to knowing what is going on with my bowels and where next we should proceed.

The stool samples measure Calprotectin which is a protein biomarker that is present in the faeces when intestinal inflammation occurs which are measured in milligrams. People that have 0-20mg are completely normal and considered healthy as inflammation exists in everyone. Those with 20-200mg would have a cold or virus/bug in their system, something the body would normally fight off itself, levels of 500–600mg will almost definitely indicate an inflammatory condition, I had over 2000! Which meant it needed immediate medical attention.

He booked me in for a colonoscopy, during which he would perform the procedure himself. The procedure will help me find out more of what is going on inside of me and he did warn me the prep will be the worst of it. I took the prescription for the bowel prep and handed it over to the Pharmacist who also gave me a sympathetic look as she handed over the bag.

The night before the procedure I open the innocent-looking sachets which needed to be mixed together with water. The sachets are a form of laxatives that are meant to clear the bowel of any waste. I thought I had taken laxatives before without issue so I should be fine plus these were orange flavour sachets, yummy! Nothing much happened at first but as soon as I let my guard down this weak diluted orange-flavoured mixture went Ragnarok on my stomach, my bowel and on my bottom. The warning did say to keep the toilet vacant after taking the prep but I had no idea of the revolting, explosive effects it would have on me all through the night.

The next day after very little sleep and burping the entire morning tasting the fizzy, weak orange flavour mixture, I made my way to the hospital with my sister. Due to the fact, I would be under local anaesthesia, it would mean I wouldn’t be allowed to drive back. I had an uber voucher waiting for the return leg.

I was given my own room and asked to change into the customary hospital garments with my dignity hanging on by my ability to tie knots behind me, the garment also had a flap for easy access to my arse.

I was escorted to the procedure room and there they inserted a cannula for the anaesthetic and asked me to lay on my side, the flap came open and without even a warning the tupe, fitted with a camera, went up my rear end and off we go. I felt it go in but after all, I could feel was pressure, I had a sense of giving it a name as it felt so intimate and maybe holding hands but as they came around to the first bend I felt the sharp stabbing pain only this time it felt it was being stabbed from the inside out! I screamed and screamed some more, I begged the Surgeon to stop, and the Nurses told me to ‘calm down’ and I ‘shouldn’t feel a thing’, ‘just breathe’ they shouted. The Surgeon was quick to act and gave me more anaesthetic which knocked me out.

I woke up all hazy with a Nurse shouting my name. I looked towards her and she said ‘oh, good you’re up, I’ll get the Doctor for you, won’t be long’. I was back in my room completely out of sorts, my head spinning and my vision blurred. By the time the Doctor arrived, my vision was a little better but my head was still all over the place. The Doctor, who was the Consultant, Dr King sat down all sheepish, very unlike the first time we met, he didn’t even make eye contact with me as he came and sat beside me. He was followed in by a Nurse with a red uniform, unlike the others I had met wearing blue or white. He explained whilst I was in pain he noticed a lump and knew he needed to know more but couldn’t get near because of the terrible noise I was making and how I became so tense that he had to sedate me. He had found a lump, a tumour just as I went under and he said the dreaded word ‘we think it is CANCER.’

I tried to make sense of it all but nothing did, I burst into tears with the only thoughts of how I was going to tell my mother! She was still mourning the death of her husband. How was I going to tell my family, still grieving their father? Or, my children who were still coming to terms with not having a ‘Dhada’ (Grandfather) and the concept of death. This can’t be true. The Doctor could not apologise enough for what they had discovered and explained they had taken samples, biopsies, and printed tattoos around and on the tumour to be tested to determine which type of cancer I had to provide treatment and care for. The Cancer Nurse (wearing red) hands me a pack with all the contact details. As they leave I’m left in, what felt like, a cold, dark room the news of cancer sucks all the colours away leaving just shades. I’m left on my own to get to terms with what had just happened.

As I gathered myself the Nurses asked how I was going to get home, by this time my sister would be at work, so I would get a taxi. The Nurses were not at all happy and insisted I call someone but I didn’t have anyone else to call. I didn’t want to tell anyone what just happened. I felt ashamed to have to call and burden someone for a lift. I said I would get a taxi but the Nurses were not at all comfortable with the idea, they even offered a lift home but I didn’t want it. All I wanted was to sit in a stranger’s car who asked no questions and did not know what had happened so I could think of how I was going to break the news to my family. So, they called me a taxi and as we got back into Welwyn Garden City I asked the taxi to stop at the Shell garage station so I could walk the rest of the way. It was only 20 minutes from home but felt like an eternity. I was limping and cradling my abdomen which was sore because of the biopsies and tattoos and when I reached the front door to the flat I told my partner I have Cancer.

June 2021 (Part 1) – Avengers assembled pt.1

The family have been told everyone is shocked by the discovery. My mother’s reaction to the news was the worst, she was more upset about it than anyone else – As I initially thought she would be too. She sat holding my hand and weeping and telling me it’s going to be OK over and over again, I’m not sure who she is trying to convince me or her. My brothers and sisters, I have 2 of each, are very supportive, since dad’s death, the majority of the family are closer than ever. My little sister tells me that she will take me to all my appointments, she’s very insistent on that, and we make a pact that she will have the first refusal.

My partner and I sit down with the children and explain that daddy has a tumour and will need to go to a lot of appointments in the near future to help daddy get better. This was unfair to them and naive of me, the kids knew all too well that I had cancer but did their best to play along, bless ‘em. I’ve asked everyone to keep it to themselves for the time being as it’s too early to say what type of cancer I have and how long I have to live. I don’t say it like that but ultimately that is what I’m thinking. Much like a pregnancy, you don’t tell your parents until your first trimester, we shouldn’t tell anyone else until I’ve seen the oncologist and devised a plan of action. My partner wants to be there at every appointment but I tell her she can’t come, I do it to protect her from any further bad news but eventually, I give in on the later appointments. She’s been a rock since my father’s death and giving me comfort even now while I recover and grieve.

Work has been very supportive and my manager Jen had a similar experience with her father, she is tremendous and things are very informal between the two of us. She advises me to get a sick note as soon as possible to cover the coming months and with regards to my wage, my pay will be cut in half but she looks at all my holidays and other ways to cover as many days as she can. My pay does restrict me but that’s not a concern for me it just means that I won’t be buying a new car yet and shopping at Aldi more often, and if you haven’t tried their salmon wellington you must it is delicious!

The biopsies, which were taken during the colonoscopy, come back negative all they can see are dead cells so I’m asked to come into Spire hospital to have a CT biopsy. This is where they scan you under the CT (computerized tomography) machine which is like a large doughnut and you lay flat on your back and you’re passed back and forth through the hole. While they pass me through the hole they map out where the tumour is and drill from the skin all the way down to the tumour. I’m given a local anaesthetic before the procedure so all I can feel is pressure. Lastly, they take a long and thin apparatus called a biopsy needle which takes small chunks from the tumour. You hear a loud clicking sound like the old firelighters mum used to fire up the hob. The small chunks are then sent to the lab to be tested to determine what type of cancer I have.

The results come in and I have cancer, but there is some good news as I have Adenocarcinomas which is the most common type of bowel cancer which gives Dr King confidence as they’ve treated so many people with this type of cancer and the success rate is high. The bad news is that the cancer is pushing into the tissue cell wall and into the blood vessels which could make it tricky to perform surgery as the tumour could get stuck to the tissue and blood vessels.

I’m referred to Mount Vernon hospital, where they have a dedicated cancer centre. I’m meeting Dr  Harrison who starts with his biography, apparently, he is a very sort after man, a Dr who has been headhunted by many private firms and those on Harley Street. Harley Street is famous for its large number of private specialists in medicine and surgery since the 19th century. He goes on to say he declined all their offers as he didn’t want to commute to London and wanted to be close to home. He’s very proud of his success and gives the impression he is the MAN when it comes to cancer treatment so I’m in very safe hands. He explains he will need to reduce the size of the tumour with chemotherapy in the hope it will shrink and pull away from the tissue wall and blood vessels. He’s keen to start chemotherapy as soon as possible as the tumour is very close to the main artery.

He is glad that I’m young as it gives him the ability to offer a lot more than his usual clients, who are over 60 years of age, and he wants to ‘throw the kitchen sink’ at me. He offers the highest dose of chemotherapy possible, he gives me a leaflet of the type of chemo I’ll be on, called Fluorouracil – also known as 5FU – which is one of the most commonly used drugs to treat cancer. I’ll have chemotherapy once every 2 weeks at the Spire hospital, Harpenden and I’ll continue the treatment at home, a little more of that later. There is a multitude of side effects, he tells me, but I’ll be prescribed drugs to balance them out. Before they can do all that they’ll need to check if the cancer has spread by performing a PET (positron emission tomography) scan.

To perform the PET scan I had to visit another part of the hospital at a later date. When I do arrive for the PET scan I’m seated in a chair which looks and feels like it was designed for Frankenstein, the chair is huge and hard I have to have a stool to get on to it. Then, I’m injected with a small amount of the radioactive drug through a cannula and then put into a separate room for the drug to pass through my body, usually 1 hour before you are called in to perform the scan. The PET scanning machine is similar to the CT machine only this one is a large tube that you are put into, the space is very small and narrow, and you are to remain very still while the machine capture and creates a 3D image. The whole process takes about 40 minutes and I dozed soon as they put me there only woken up by the tannoy instructions to stop fidgeting. I can’t help it, I’m tired of not having anything to eat prior to the scan, as recommended, and I’m experiencing a slight amount of claustrophobia.

The other thing that Dr Harrison had booked me in for was a catherport to be inserted to help with administering chemotherapy. The idea behind the port was to have it installed under my collarbone and a small tube inserted into my neck vein, the port would sit just under the skin which would allow the cancer Nurses to administer chemo through it rather than putting in a cannula every time.

The operation took no more than 20 mins and I was able to walk out straight after. The stitches will dissolve and I would be able to have chemotherapy after a week. I can feel the port and tubes stuck into my neck, at first it’s hard to swallow and turn my head to the right, to begin with, but you get used to it being there after a while.

The Pet scan and the operation for the catherport were done on the same day and in between the appointments my sister and partner had a meal at Las Iguanas, Watford. You’ll see that every appointment was either followed by a meal out which was nice as I paid more attention to the menus than the procedures or appointment, it felt good and helped the anxiety I was feeling. I knew that the further I go with chemotherapy the more I’ll lose something of myself, that I wouldn’t be Mo anymore, and the drugs would change me and dictate who I am and what I can and cannot do.

I meet with the Nurses who will be looking after me while I was having chemotherapy and they are lovely. I’m worried about chemotherapy and the side effects, especially losing my hair, I’m already balding so I don’t need any further assistance in that department and I keep looking back at my previously semi-healthy life looking at photos and meal plans and all that extra energy I use to have all gone with a big blow to my abdomen with the news of cancer or even before with the symptoms and thinking where did I go wrong?!

June  2021 (Part 2) – Avengers assembled pt. 2

It’s early and I’m wide awake, I know that because the other half is still in bed, she’s usually up at the crack of dawn and it’s still dark outside. I get up and make my way to the kitchen and fill up the kettle for a cup of coffee, as I‘m measuring out the coffee I can feel someone standing behind me, looking, staring right into the back of my head. As I turn around I see him just standing there smiling.

‘Dad…….what are you doing here?!’

‘Madhi, I have to go’

I’m startled by the pop and whistling of the kettle, it forces me to break eye contact with Dad to look around towards the kettle for only a second as I turn back he’s gone. I run after him through the living room out into an endless corridor shouting;

‘Dad! Wait! Please don’t go!’

I wake in fright breathing heavily, my heart racing and sweating profusely. The other half is still in bed sound asleep, we have an Emma mattress so no matter how much I toss or turn she doesn’t feel it. Anyway, I make my way to the kitchen, through the living room, the kids are up sat on the sofa with the TV off, very unlike them, I have an eery feeling I’m still dreaming. They give me a strange look probably because I’m looking at them strangely, I walk on through to the kitchen and fill up the kettle and as I pour the coffee I look over my shoulder, I’m waiting for him to call me the nickname he gave me ‘Madhi’. It means the ‘guided one’ in Arabic.

The feeling of when I was standing in the kitchen wasn’t the same but I kept looking over my shoulder for a while hoping he would smile at me one more time.

The Whatsapp group is in full flow, an absolute must as you can keep everyone updated all at the same time and not miss anyone. I’ve told some close friends, those that I’m in contact with most of the time, we’re always planning to go out and eat every month I didn’t want to keep declining the invitations without proper reason, I think having cancer is enough of a reason. They’re a great bunch of lads, very understanding and very supportive.

There are some that may not want to be part of it but at least you offered them the opportunity. The group is called ‘Samad’s Road to Recovery’ a positive spin on things – Lord knows that I’ll be needing it by the bucket load. Someone has shown Mum how to use voice notes and she is tearing it up! It’s like a toddler who’s figured out by following the rope on the back of the doll will make it speak and she does it over and over and over again. Kidding aside its great hearing Mum’s voice.

I’m on a strict diet of no processed meat, no plant-based foods, no foods in high saturated fats, no artificial sweeteners and no smoked or cured meats. Oh, and no chilli, what?! No chilli?! I’m Asian we eat chilli with our cornflakes. It’s not something that I can commit to, I’m sorry.

The consultation for chemotherapy went well, I keep being reminded of how young I am and how unfair it is by everyone I meet. I’ll need to have my blood taken before every chemotherapy session. The Nurses explain they’ll be giving me the Folfoxiri drug which is an abbreviation for:

FOL – folinic acid (sometimes called calcium folinate or leucovorin)

F – fluorouracil (5FU)

IRIN – irinotecan

OX – oxaliplatin.

AKA 5FU

Every 2 weeks for 3 months therefore 6 rounds of chemo before I’m scanned again to see if there is any reduction of the tumour with the hope they’ll be able to operate on me. If there is little to no reduction of the tumour I’ll go for another round of chemo. It’s all in the leaflet but I didn’t bother reading it.

21st of June the first chemotherapy session. I’m dropped off by my older sister and my partner who isn’t allowed in due to the Covid restrictions within the hospital so while they go off to Ninos to enjoy a delicious brunch, I’ll be sat linked up to tubes and machines for the next 4 hours. I walk up to reception who takes me through to the ward where the Cancer Nurse tells me the 5FU is delayed due to the courier being stuck in traffic, great! If I wasn’t anxious enough now I have to wait even longer to start the whole process.

I unpack my bag of goodies we bought from the Esso station as I forgot to pack any food (that goes on the list too, must bring food as I’ll be here for some time so it’s worth having something to nibble on). I bought my tab with me so I have something to watch, a picture of my kids and a book given to me ‘Doctors Get Cancer Too’ I know it sounds morbid but I find reading books help process what I’m going through and what may come next. There are so many similarities between the book and my experience so far but equally many differences but it is a great read and I thank my partner’s friend who suggested it to her. It’s worth keeping a list of what you want to take in before the hospital, a sort of checklist to make sure you have everything you need to help you get through the day.

The first cycle seemed easy I had a wonderful Nurse looking after me, and we spoke about our children, hers were a lot older than mine but she still remembers so vividly of her children around 7/8 years of age. I think that’s like all parents, especially mothers they never forget. I’m stuffing my face with BBQ-flavoured Hula Hoops and a cold peach iced tea. Then the second cycle, it was about 20 minutes in and I started to feel dizzy, cramp in my right leg and sweating I press the buzzer and the Nurses looked at me and knew exactly what I needed, more anti-sick. As soon as the injection went in I felt a huge amount of relief I didn’t know what was going on with me luckily I had such fantastic staff around me. The second cycle made me feel drowsy which the Nurses said was normal and most people would try and take a nap which I did try to do. I slept for about 20 minutes and saw my phone had been blowing up with messages and voice notes asking ‘how am I?’ and ‘why haven’t you replied yet?!’, ‘what’s gone wrong?!’ I responded on the group chat to say I’m fine and there was nothing to worry about.

After the chemotherapy had finished I was given an infuser that looks like a plastic drink can with a balloon inside, they attached it to my catherport and said I would be continuing the chemotherapy at home. The infuser would be removed after 2 days which needed to be done at the Spire hospital. I was also visited by the Pharmacist who gave me a list of medications I’ll be taking including a booster injection which I needed to take after the infuser had been removed to help boost my white cell count. Within the bag were also strong painkillers, laxatives, mouthwash and steroids. She gave me a printout of all the medications with the dosage and when to take them. Getting home and unpacking the medication we thought it wise to get a pillbox to have the meds ready in advance (add to list).

The chemotherapy session went well, a lot better than I thought it would be. I thought it would be a good idea to get everyone out for a meal as the restrictions had been loosened and I felt as time went on I may not be in a condition to get out as much. We went to The Turkish Kitchen, Hatfield my Mum and my sisters had never been and I was a big fan of their food. They had since refurbished the place and the presentation of the food had changed too. The meal was a huge success! Everyone there were talking and laughing and I thought to myself if this should be our last meal together then it has been a great one. Again, not meaning to sound morbid but I couldn’t help feeling that my time was running out and should the worse happen I’d made up for it as much as I can.

I went out to old friends and family those that I had fallen out with mainly due to lifestyle choices rather than a feud. I apologised and asked them if there was anything that I owed they should say so now so that I didn’t miss the opportunity to pay them back and I could go on to the afterlife with peace of mind. I’ve arranged for funeral cover, I had to have paid a full year before it had fully activated otherwise I would have lost the money I had put in, money that could have been used elsewhere, nonetheless I was confident I would last at least a year. I left the instructions with my little brother as he had done a wonderful job with our fathers’ burial.

On the 28th of June, I woke up with severe chest pains, I struggled to breathe and my rib cage felt like it was going to rip out of my body, like the thing in Aliens. My partner called the ambulance and they came straight away after questioning and observing me for a short time they decided it was best to go to the hospital. I arrived at Lister, Stevenage and was put into a cubicle so that I was isolated as I was considered high-risk. The Doctor thought I had a blood clot and sent me for an X-ray and CT scan. They gave me morphine for the pain and one Doctor asked me if I was allergic to anything I told them penicillin he replied by suggesting the Nurse administer penicillin but through intravenous (IV) injection which I insisted we didn’t as I had a severe reaction the last time I had been given penicillin, I had vomited and had diarrhoea at the same time and I didn’t want to go through that again. After much debate and being fortunate to have a senior Doctor walk past who asked the Nurse about the noise coming from my cubicle he rejected the use of penicillin and offer an alternative. My results from the X-ray and CT scan came back all clear and I felt a lot better once I had the antibiotics, the Doctor confirmed it was inflammation in the lungs due to the medication I was on. He discharged me and I went home on the same day.

July 2021 (Part 1) – Come on England!

I’ve decided to create a will, Dad never wrote one or didn’t tell anyone he had and it’s proving to be a pain in the arse to figure out who is owed and what is owing. I didn’t want my family running around like headless chickens after my death trying to find where and how my wealth is and how I want my children to inherit the lot whilst in the care of their mother. The confusion Dad had caused by not having one and the argument that may arise from it we all agreed it was best to leave the money found with Mum. I’ve shared the will and my funeral plans with my little brother who is kind enough to step up if the worse should happen.

The Euros are in full flow, little man has asked for an England kit for his soccer camp so he can play alongside Harry Kane one day. England are doing so well and the kids are very excited about the chances of winning the competition, every night England play pushes their bedtime later and later, they’re cheering them on singing the chorus of ‘3 lions on a shirt’. No one knows the rest of the lyrics to the song. By halftime, the children struggle to keep their eyes open but with one limp fist, they cheer. Considering how many matches have already been played you’d have thought that we would have made an effort to remember the rest of the words to the song, but to be honest, we didn’t think they would go as far as to the final.

Each game is a respite from the side effects of the chemotherapy but there are times my vision is blurred and my head is pounding but I don’t let on for the sake of ruining these precious moments with the family.

It’s the second round of chemo a good friend of mine jumps in at the last moment to take me to Spire hospital, there seemed to be some confusion regarding the travel plans but I have good people around me ready and willing to help out as much as they can, offers are plentiful when you’re in this condition, unfortunately, there’s not enough to go around.  I take with me a suitcase including a change of clothes and some PJs so I’m as comfortable as can be, but these are not any kind of pyjamas these are my Dad’s unworn pair of M&S pyjamas, they still have the cardboard sleeve around them. The last time I went in I wore a pair of joggers which made it very hot and a t-shirt which made it awkward for the line to be attached to the catherport, the buttoned pyjamas make it a lot easier for the Nurses to get to the tubes and lay comfortable and cool enough to relax in the bed. The Nurse takes a liking to my suitcase, I tell her that it was on offer at Costco – a Manager’s Special. Every time she visits she can’t help herself taking the suitcase for a stroll around the room, it seems to get more attention than I did.

From the first session, I learnt that the first cycle of chemo gave me lots of energy so this period was best used to read and to talk to the family and be creative. I also thought to educate myself on money, an area I’ve never been good at. I Will Teach You to Be Rich, Second Edition by Ramit Sethi is a fantastic book, it talks about the 50/20/30 principle, 50% of your income should be for your rent and bills, essentials (fixed), 20% for saving and investments and 30% guilt-free money, to spend as you like. It also talks about how to diversify your portfolio but this isn’t a financial blog, best you pick up the book yourself if you’re interested. I create a spreadsheet to help make sense of my current finances and my future finances and I add a home to my vision board. It helps me stay positive and look forward to the future.

The second cycle makes me feel drowsy and nauseous, hot flushes and dehydrated so best to get some sleep or watch a movie, things that do not consume much energy or require much focus. I daren’t close my eyes fully for the attention my suitcase had been receiving it could easily have been taken from me. Remember, if you are in my unfortunate position, make the room a home away from home, you’re going to be there a while.

The session passes by smoothly without any real issues and the diffuser is attached and I’m sent on my way. A cousin of mine picks me up someone I’ve not spoken to in years, someone I idolised growing up, we talked about the past with great fondness, of how we grew up with each other’s family visiting every weekend, how our Dad became their Dad and vice versa, how we played cricket in the park and rode back and forth from Welwyn Garden to St Albans. Good times, great times!

I also reach out to my sister in law, I haven’t built a meaningful relationship with her, a mistake on my part. I reach out in the hope she will give me time and that it’s not too late to have her call me her brother. She’s kind enough to allow me to speak with her on a regular basis and becomes a great friend when I’m laying there in need of light conversation and entertainment. Bean.

On the 13th July 2021, 2 days after the devastating result of the final of Euro 2021, I’m woken up by a cramping pain in my leg, my chest is pounding again and my veins in my right leg and foot have turned black, we call the Cancer Nurses who ask that I come in immediately. As we make our way to the hospital my head feels like it’s in a vice slowly turning and squeezing creating pressure adding to the agonising pain I’m already in. We arrive at the hospital and skip the pleasantries and I’m lofted straight onto the bed. My legs and feet are exposed and the nurses are pushing down onto my veins. They believe it to be Serpentine hyperpigmentation common with the type of drug that I’m on and will eventually fade over time. The cramps are dealt with by a line of fluids and I’m sent for a CT scan regarding the head and chest pains.

I remain in bed waiting for the results of the scan. In the meantime, the blood that were taken the Friday before have come back to show that my white cell count is zero and my calcium levels are low, I’m given a booster injection for both and monitored the rest of the day.  My vitals improve and the pains are not as intense as they were before, I’m told to go home and recover there and should I experience any further pains to call 111 for advice and instruction. My next chemotherapy is cancelled due to the condition I was in as well as the blood results.

My Dietitian calls to offer me Aymes, a milkshake filled with all the nutrition you will need whilst on chemotherapy or recovering after surgery, they help keep your energy levels up and taste very good too. I would recommend having them on prescription as soon as you start your chemotherapy, it’s also worth noting that if you are a cancer patient or know someone who is, they are exempt from paying for their prescriptions, something I found out later after spending almost £100 on prescriptions. You’ll need to fill out a form that you can get from your GP, why they do not tell you this I do not know! She, the Dietitian, also tells me I’m allowed ice cream as a dessert or smoothies and sends me all kinds of recipes which made me very happy and salivating over the different combinations for the morning, noon and nightly treats.

On the 19th of July, my condition declined and I take a turn for the worse, the ambulance are called and I am blue lighted to Lister hospital.

And, no it’s not the amount of ice cream I’ve been consuming!

July 2021 (Part 2) – Eid

It’s Eid day, 20th July, a very important day for Muslims. Eid al Adha follows the completion of the annual Hajj pilgrimage, at the time of Qurbani (sacrifice). The family is very excited and the kids can’t wait to see their Dhadi (Grandmother) aunts and uncles. ‘It’s the most wonderful time of the year’ is what we would be singing if it wasn’t prohibited as it’s Christmas for us, we cheer, we eat, we exchange presents and we are all merry.

Our Eid morning would begin with an early start for Eid prayers at the local community centre or school hall, whichever the Islamic society of Welwyn and Hatfield was able to secure. Then we, (mum, dad, brothers and sisters, children), would drive back to our flat where we would have a 2 part breakfast. The first; is a continental breakfast with croissants and cream pastries, fruit, toast, coffee and the second; is a full English breakfast with poached eggs, turkey bacon, beef sausages, the works! We’d conduct a buffet-style service so everyone could help themselves and as much as they like. It became a tradition when we first moved into the flats at Layton Street. Later in the day, we would have Pakistani food at mums such as biryani with tandoori chicken, chapli kebabs, samosa and curry, followed by a really sweet dessert-like rasmalai and halwa, it would be a feast that would fill you up for the next 3 days.

Dad loved breakfast on Eid, he looked forward to it all year!

However, 2021 was a year I got out of morning prayer and missed out on all the food and festivities. The night before I became very ill and the ambulance were called, I had a fever and became delirious, I was panicking because I was having difficulty breathing. The ambulance didn’t hesitate when they came through to look at me and said they will need to take me in. I was blue lighted and back in Lister hospital inside a pod to protect me as I was considered high risk.

The Doctors thought I had a chest infection, they carried out the routine blood work and sent me off for an x-ray and a CT scan, they then transferred to AMU (Acute medical unit) and kept me there for 24 hours as my CRP level was at 276. I needed oxygen fed to me as the pain in my chest was becoming worse and the X-rays and CT scan showed that I had, what appeared to be, a dark cloud over my lungs.

As the Doctors came up with a plan of action my partner came to see me and dropped off some of the food that was cooked for Eid day, she kept me company as I ate it. We did the usual chatter of ‘how are the kids?’ and ‘what have the Doctors said, so far?’. She showed me pictures of the kids dressed up and the enormous breakfast spread out across the extended dining table. You could see the sausages were wobbling as someone had nicked one before the picture had been taken, she blamed the kids but I’ve known her for over 14 years now so there’s no getting away from it, bless her but I let her have it as I do every year.

I was still being supported by oxygen, at least 40% so I ate the food at a snail’s pace. I insisted on the other half helping me before the food went cold, I knew she hadn’t eaten and rushed to get here to see me, she’s a martyr putting everyone before herself something I lost sight of in the previous years.

The Ward Doctor came through while she was there to say they’ll be moving me to 11 A North, I had what is called Staph infection and would need antibiotics to help clear the infection. We gathered my belonging and away I went with a Porter who used me as a go-kart swinging round the bends and crunching doorways as we made our way to the ward, I was glad to get there in one piece!

I’ve not stayed in a ward since my early years of around 7 or 8 years of age, I was admitted to the QE2 Hospital, Welwyn Garden City, when it was a fully pledged hospital at the time, having experienced difficulties breathing where the Doctors suggested I was asthmatic only to find when the Nurse gave me a glass of orange juice my windpipe started to close in and I was breathing with a panic. I can’t remember the remedy but the conclusion was clear to say no more unconcentrated orange juice in future, we didn’t understand why, whether it was an ingredient within the orange juice but I stayed well clear of it even now. Apparently, I loved the care so much that I refused to go home and was dragged kicking and screaming over the shoulder of my Dad, LOL but, this was a very different experience.

I was put into isolation as the wards were deemed too dangerous for me to be put among other people since I was a high-risk cancer patient. The infection caused me to become even more delirious and confused, I had no concept of time, I was panicking in the room for no reason other than my mind was playing tricks on me. For example, it felt as if I was left for days without any contact from staff or family, only to be told it was hours at most as my IV lines had to be changed and my wife had just left no more than an hour ago, the more time I spent in isolation the more confused I became but staph infection would do that to you.

Staphylococcal infection, commonly called staph infection, can live on the healthiest of person and whilst it remains on the surface skin area it’s harmless but if it was to enter the body, which in my case, my lungs, it can prove to be deadly. A staph infection could be caused by merely a cut whilst shaving and those on chemotherapy are highly susceptible to it. The bacteria had caused lacerations to my lung wall and abscesses had started to form within my right lung cavity, pockets of air trapped inside causing shortness of breath, fever, confusion, muscle and joints pain, particularly at the knees as it eats away at your joints. There were concerns of the bacteria damaging the heart valves which could lead to heart failure. Hence why I was given 3 different types of antibiotics which were administered 6 times a day. Due to my penicillin allergy, these were tailored to ensure no allergic reaction.

The ward was run at an efficient pace and the staff was stretched very thin, Nurses didn’t have time for small talk and came in to change the IV lines and straight out again. My family struggled to find timeslots to visit me as per the restrictions due to outbreaks of Covid19 only one designated visitor would be allowed in and had to book the times online. The Nurses on the ward would tell my family that if the slots had disappeared it meant that no one could come in but the online booking service did not have any future slots and so we had to get in touch with PALS (The Patient Advice and Liaison Service) to raise our complaint. They were fantastic and said that it should be 1 slot allocated to each bed in the ward, so who was booking ours?!  They looked at the booking service and said there was something wrong as they too couldn’t see any future slots for my bed number but could see slots for all the beds in the communal areas of the ward. They allowed my partner to visit without the need for booking online as there was an apparent error on the system, she would need to call ahead and had to adhere to the rules of visiting, she would only be allowed up to 1-hour and only at the given times.

My partner did her best to visit every day, she didn’t drive so had to get 2 buses and arrange childcare, her friends would help and so would my little sister with transport and child care. The hour flew by and I was left all alone for the rest of the 23 hours. I called Mcmillian at times when I was feeling very low, they operated from the ground floor at Lister, who was kind enough to lend an ear but grew concerned with the gibberish I was talking. I told a Nurse at the desk I was going out of my mind and needed to talk to someone to just have a conversation he told me it would take 48 hours for someone to come and talk to me.

Fortunately, a Filipino Nurse had overheard the conversation and saw the dumbfounded look on my face. She said they can organise a member of the Parish to come and see me and she was kind enough to sit with me to talk after her shift. We spoke about our families and trips down memory lane. Her family were all living in the Philippines, she had travelled alone and worked as a Nurse in Abu Dhabi where she was paid a tremendous amount of money (with the favourable tax rules) as being a Nurse was regarded in high esteem and in high demand but she travelled to the UK after 3 years as she found the rule was too strict and didn’t enjoy any of the past time pleasures as much as she hoped to. She came and lived in the UK with friends she met in the middle east but many of the qualifications she gained in the middle and far east are not acknowledged here. Take for example my catherport, she could use the port to administer antibiotics rather than stabbing my arms looking for an adequate vein, mine would collapse over time due to being poked and pricked so often, and they would need to find somewhere else to attach another temporary catheter. Why the UK doesn’t acknowledge the overseas qualification and work experience I do not know.

The Macmillan Nurses were brilliant they came and visited me only once but left a huge impression on me. They came in as a pair and they had a swagger about them, a proudness of being Macmillian Nurses they needed no introduction to the other staff and came and went as they pleased. They came to see if the catherport was the reason for the infection and took samples from it to be tested, they did the whole ‘you’re so young!’ but I didn’t mind I just raised my eyebrows and laughed about it. They also questioned why the catherport wasn’t used to deliver the antibiotics but there wasn’t anyone trained to do so, or at least certificated within the UK. They asked how I was and I just balled my eyes out, I was so weak and exhausted, the infection was taking a toll on me and the antibiotics hadn’t kicked in yet. They both gave me a huge hug and comforted me, they waited and I said everything that was on my mind and they sat there listening and caring they were simply amazing.

Imaam Rizwaan came to visit from the hospital’s Chaplin Service, they come to those who ask as part of spiritual counselling service, even if you aren’t religious they’re there to have a chat which I was in desperate need of. He started the conversation about his green Toyota, he seemed proud of the number of miles he had accumulated driving from north London to Stevenage and he also worked at Mount Vernon where he met Dr Harrison, my Oncologist. It’s a small world after all. He went on to tell me about his love for food and how expensive it is outside of London. He planned a tour of North where he would visit Family in Oldham and journey across Greater Manchester and parts of Yorkshire on a foodie trip with various restaurants he wanted to dine in with his family. The conversation went back to his beloved Toyota and then his time was up. Wait…. What?! Time was up???? I thought this was my counselling session not his publication of his version of The Ground Tour meets Man Vs Food, I haven’t said a word. Anyway, it was nice to speak to someone, laugh and forget about what was going on inside of me. He said he would keep me in his prayers and ask the other Parish members to come and visit when he’s not here on his grand tour.

By the time he left, it was my turn to salivate over the favourite meal of the week, a cheesy omelette and a chocolate eclair. The hospital wasn’t that bad it reminded me of the school dinners, it was fish Friday and a chocolate sponge on a Tuesday with the skin on the custard. Delicious! My mother insisted on cooking for me constantly asking what I wanted to eat but by the time it arrived the food had gone cold and there wasn’t a microwave insight and it would go to waste. The Nurses would often weigh me and by the time I was out of the hospital, I had lost over a stone. I opened up my book, Doctors Get Cancer Too, and the next page is about being in A&E alone and terrified, needing and wanting family after a few days it settles.

My mood would be like a rollercoaster; the infection, the isolation and the amount of time I had alone thinking, talking to myself looking out the window thought of stepping on the balcony and getting rid of it all, ending it but it was the thought of my family that kept me from falling over the edge even if it was only in my mind. I missed my kids, I hadn’t seen them for 9 day which felt an eternity especially as I haven’t spent more than 48 hours away from them since the day they were born. My partner noticed the change in my mental health and negotiated with the Doctors to wheel me out to the communal quadrant outside, I wasn’t well enough before to be taken from the room, seeing them gave me the strength to carry on, get better and get back on track with the chemotherapy. It would be 6 more days before I could go home.

The more time I spent in hospital fighting off infections the less time I would have fighting cancer, it was the lesser of evils I had to constantly battle with during my time with cancer, not just this bout but many more to come.

August 2021 – Discharged on bail

On August the 3rd, after 15 days of being in the hospital, I’m finally well enough to be discharged but with one condition, I would need to continue my treatment through the QE2 hospital, Welwyn Garden City. Which meant I would need to visit the Ambulatory Care Centre (ACC) every day as the antibiotics that I required can only be administered through IV. I would see Imam Rizwaan once more, for 2 hours we sat and talked and laughed, I finally got a word in this time. He told me that he visited my Father while he was in the Covid Ward. He spoke about seeing my little brother and praying over Dad when he passed away, he also knew my little sister who worked in the labs downstairs. It really is a small world.

When all my bags were packed and I was on my way downstairs I felt very anxious as the Doctors had promised to send me home on two or more occasions but at the last minute, they would spot something from an earlier scan or blood result that would suck me back into isolation like a Henry vacuum cleaner. I saw the blue of my Honda Jazz and I ran towards it, “run Forest, run” my family laughed at the sight of me running although it was more like a waddling penguin.

When I arrived home there were banners on the front door, “Welcome Home”, I walked into the living room to find more decorations, a party with the whole family and presents, ‘I should go to hospital more often’, I told myself (famous last words). It was a lovely touch by the family.

The next day I visited the ACC department at the QE2 hospital, I was still very weak from the staph infection, I needed to be wheeled up to the first floor. The Nurses asked me to take a seat inside the mini ward, as I stood, I was quickly down again. I had a dizzy spell so they kindly allowed me on one of the very few beds available. My wife and I were given tea and biscuits…the perks! I met a wonderful Doctor, Dr McGuinness, who decided straight away that I was too poorly to be coming to the hospital every day and made arrangements for the Community Nurses to visit me at home.

The Community Nurses were fantastic, it was a different Nurse every day and each of them came with a different conversation from religion, and sports, to travelling around the world. By the end of the week, I was feeling a lot better and was on my feet a lot more. The last appointment came and went so quickly and all I needed to do was to wait for the blood results which were taken at the end of the week.

I was having tea with my mum and little sister who came round to visit when the phone rang and it was Dr McGuinness, she said the blood culture results have come back and they show that I have an infection, she went on to say I need to admit myself into hospital, Lister, right away. My head didn’t leave staring at the floor, I was so upset about having to go back in, I felt so good, so much better than I had felt since leaving the hospital and ten days later I would have to go back in.

My bags hadn’t been unpacked long enough for them to be repacked and my sister drove me to Lister hospital, I was moved to 10A North on a bed within a communal area. I’m laying on a bed surrounded by people, people, what a difference they make! At first, I suspect the Doctors haven’t read my notes as I’m not in isolation but I don’t mention it as the effects the previous stint had on me still lingers in my mind. I took a look around to gather my bearings, to my right was the Nurses desk and in front of me was a man who was talking to himself, looking very frail, his name was John. He reminded me of me during my time fighting the staph infection. His ex-wife would visit him every day, she was a sweet old lady and had to catch 2 buses to get there. We would talk quite often as John would doze off on occasions during her visit, not because the company was bad but because of how unwell he was.

To my left to see a very old man with his wrinkly arse hanging out of his hospital gown, eww! In front of him was a very large man called Paul who was loud and a proud Chelsea fan, I don’t know what is worse to look at a Chelsea shirt or a wrinkly arse, I went for the man who was talking to himself. Paul suffered from seizures and was admitted to the hospital after his daughter found him, coming home after work, on the bathroom floor with blood pouring from his head where he had hit the bathroom sink. He also had pins screws put into his feet which were poking out pushing up into his skin from a previous injury. His entire family, bar one, his son, worked for Tesco, I didn’t see any of his family come in but he was always on the phone to one of his 6 children or his wife.

The man with his arse hanging out woke up and turned towards me and we introduced ourselves to one another. His name was Lesley he was 95 years old but you wouldn’t know it because he looked and acted so much younger, he was a hit with the Nurses as he was so witty and full of compliments. He and I bonded very quickly. He had a number of issues including his kidney failing and his feet were retaining a lot of water. He would tell me stories from when he was my age, living in North London, working for the Post Office in Hertfordshire and his daughter lived close by. He’d been married twice, his first wife cheated on him and left him for someone else, he would go on to remarry and have a daughter, sadly his second wife passed away. His daughter convinced him to move from his flat in North London to a retirement home closer to her but he hates it, he feels as if he doesn’t fit in. She also bought him a new phone but the pair of them didn’t know how to use it. I managed to get him on to the hospital’s wifi so he could catch up with the news on the BBC app. We would encourage one another when we would feel low or when we would be told we could go home and then at the last minute we would be told to stay because there was some anomaly with our blood work or a scan.

The staff in 10A were amazing! As there were 4 of us, patients, it was easy to get to know everyone and vice versa. Lesley and I wouldn’t give up the chance to speak to them and pay compliments to them too, they knew that we were only playing and they helped pass the time. There were many students too who loved being on the ward as they could easily complete all their objectives for their course work and still had time to have a joke and laugh. There were times when we were told off by Dr Barlow for making too much noise. We were like little school kids, lads, just having fun and making the most of the rotten reasons we were here.

Dr Barlow kept me well informed of the various scans and tests that they had planned for me, it was a case of waiting as you would get called at any time to be taken away for various reasons. Sometimes when you are about to tuck into your favourite pudding, other times when my partner would come to visit after arranging childcare, a train and 2 buses but you can’t help these things and you learn to be grateful for all the attention. The main issue Dr Barlow had was my Oncologist being on holiday, somewhere very hot and without reception, so I’m told. And, I’m told he doesn’t care about the infection, his only concern is cancer, I guess that is what Aviva pays him for. Dr Barlow decides to take action and inform Dr Harrison of the progress rather than ask for permission. Which I totally agree with.

Family visits were frequent between all of us, except Paul, and the staff were kind enough to allow family members to spend a little more than an hour, providing it was the designated visitor. Lesley and I would share treats brought in to our loved ones which some Nurses frowned upon but others tucked into without needing to be asked twice. I was well enough to go outside and sit in the warm communal area to see my partner, children, mum, sister, aunts and uncles. We would watch the children play games on the green. And I would feel the air on my skin.

Paul was the first one to be discharged and Lesley and I placed bets on each other as to who would be next to go home. John was told he could go home but remained in his bed for a further 4 days as there were complications regarding his travel, the hospital transport would cancel on him almost every day but eventually, his son would come to collect him.

Before I could leave I would have to have the catherport removed as there was a strong suggestion that was the source of the infection, it turned out it wasn’t the cause.

The antibiotics have done the trick and I’m ready to go home ahead of Lesley but Dr Barlow is still concerned as the last X-ray shows a dark cloud over my lungs. Dr Barlow wants to experiment to see how I will react to coming off the antibiotics. There is also the concern of the tumour which is growing, according to the latest CT scan, so there is a desperate need of getting back on chemotherapy.

My CRP levels are good and have been for the last 4 days and the Doctors are happy for me to go home. On the 26th of August, it had been 14 days since I first arrived on the ward and I finally get to go home, a day ahead of Lesley. I say my goodbyes with loads of treats for the Nurses and for Lesley. I found a friend on ward 10, a wrinkly old arse, and we exchanged numbers to carry on that friendship.

When I got home the banners were still up and it felt like Dorothy in Kansas.

On the morning of 27th August, I woke up with a fever, my chest was in pain, I was delirious and so my wife called 111 who put her through to our GP practice where a Doctor came out to see me. She took my vitals and called for an ambulance and I was given 30ml of oramorph (liquid morphine) without any effect. She left to go back to her practice and said she would call through to the ward so I would not have to wait in A&E. The ambulance arrived shortly after she left and as they carried me downstairs they had the Doctor on loudspeaker asking whether she had been able to get through to the ward, as the ambulance took off the GP said, she hadn’t been able to get through to the ward and said she was annoyed with the ward, she called me a ‘dying patient’.

August/September 2021 – Back again

I’m moved from AMU to 10A North, the staff are sad to see me back and each of them asks me “what happened?…You were doing so well!…What went wrong?”. As the shifts change the same questions are asked over and over again. I feel a sense of guilt and embarrassment to have to come back so soon after I had said my goodbyes to the staff, to Les. The banter isn’t the same, I miss my Les, most of the patients sleep throughout the day and scream during the night.

The knee pains are the cause of the staph infection, it is common for the disease to eat away at the joints. Fluid had built up around and behind the knee cap which felt like they were about to pop off. The doctors drained the joint and prescribed an ibuprofen gel to be applied when required, they also brought back the antibiotics to fight off the infection.

Google sends reminders of the past, of a time lying on a beach with family, a time when I had a full head of hair and was in good health, a time which I cannot quite remember all that happened but I knew I was happy and I was well. Warm memories melt the heart, a smile radiates warm air, a stroke of the head and oh no it’s almost gone! Oh, well, it was a fond memory.

Dr Barlow is concerned that the cause of the infection is the tumour, as all the blood work carries a distinct marker of the bowel and stomach. The tumour has been perforated and is spewing toxins into my bloodstream, causing me to become unwell so often. The antibiotics work and fight off the infection but they cannot put a bandage over an internal wound so I’m caught up in this vicious cycle of fighting off the infection with antibiotics, feeling better and then falling ill again.

Dr Harrison, my Oncologist, wants me to be admitted to Watford General Hospital, but it would mean that I discharge myself from Lister and make my own way to Watford. I ask Dr Barlow why I cannot stay here, at Lister hospital? Is the care no better than Watford General? Do they have better Doctors? Better Nurses? Do they have superior medicine? Greater Surgeons or expertise? Why Watford General? I do this to agitate Dr Barlow, make her feel as if Lister hospital is being belittled and for her to take ownership of my care. I am in no condition to be dragged across the county only so my private medical insurance pockets can be emptied, at least that is how I felt at the time.

It seems to have worked as Dr Barlow has escalated my cause to the Disciplinary Committee she argues my illness would be better served here and that I am not well enough to travel. The committee agreed and suggested that I discharge myself from the care of Dr Harrison and Aviva so they can continue without the need of asking his opinion or permission in future for a smoother transition, which I am more than happy to do so. Don’t get me wrong, I have nothing against Aviva or Watford General, Aviva have been great and provided me with resources and turnaround times I could only dream of, not to mention a whole room to myself whilst having chemo. It was merely the case that I felt I was being used as a cash cow and not as a cancer patient. I have one last call with the Cancer Nurses at Spire hospital, Harpenden, who have been so kind and brilliant with my care throughout chemotherapy.

My son gets a hold of the family group chat and sends a message in the early hours of the 12th of September, “morning abba (daddy)”. I find out later that he and his sister have also kept themselves up to date with the group chat by ‘borrowing’ their grandma’s phone. They know all our pin numbers on all our phones and have been secretly reading the messages being sent from everyone. They are a resourceful pair and have been confiding in one another. Their Mum spoke about them talking to each other during the night, but she couldn’t make out what they were saying. They later mention they were talking about me and what they read in the group chat.

I assign my care to Dr Barlow, officially, and the wheel starts to turn a lot quicker, the age-old saying of ‘too many chefs’ comes to mind. She tells me that I am in need of surgery, there is no other alternative, and we need to break this cycle. A plan is being devised among the Disciplinary Committee and they are confident that even with the complications of the tumour, mentioned earlier in the journey, they can remove the tumour.

I’m discharged from Lister hospital for a short while so that they can organise the surgery, I’m given priority but considering that the whole world was in crisis with Covid and the NHS was at a standstill fighting this awful disease many patient’s surgeries were put on hold, priority doesn’t necessarily mean anytime soon.

On the 26th of September, my wife and I were dropped off to meet the Surgeon and Colorectal Clinician Nurse, to discuss the surgery. We squeeze into a small room where he explains; my tumour is now the size of a grapefruit, pushing up into the other organs, squashing my stomach and squeezing my lungs, making it hard to breathe normally.

We question why the surgery can happen now and not when it was first diagnosed, he reminds us the tumour had attached itself to the surrounding tissue and so surgery wasn’t an option, however looking at recent CT scans it appears as if the tumour has detached itself from the surrounding tissue and back into the bowel, possibly as a result from the chemotherapy.

My wife is scared and asks “what happens if during surgery they find the tumour is still attached”. He replies “We will do what we can”. For the next 7 days, I’m to meet with a range of different people before surgery each playing a significant role from pre-ops to aftercare.

While we wait my condition starts to worsen (I know, oh not again) and guess what?! 6 hours after meeting the Surgeon…I’m back in hospital! (Who writes this!) 17 hours later, I’m rushed in for emergency surgery.

October 2021 – Casualty

I’m wheeled towards the operating theatre. My partner makes it just in time to see me go in, (“Alexa; play BBC Casualty theme music”………… “OK, I don’t know that one here’s a list of similar music, here’s ‘Jackanory’ by CBBC”, anyway!)

I’m given an epidural, an injection in the spine to stop you from feeling pain, then taken into the theatre room to perform a Hartmann’s Procedure, which removes the diseased part of the large bowel and is then redirected to the surface area of the tummy as a stoma (colostomy). 52 metal stitches from my navel up to my chest.

The family are all waiting anxiously for any news of how the surgery went and my condition, they called every day asking to speak to someone that can give them an update. They’re told that I’m out of theatre but that is all the Nurses can tell them, more news will be given by the Surgeon. Finally, on the 2nd of October news comes that I’m still in ICU because I’ve been critically ill, the tumour had grown to the size of a small watermelon, previous scans did not show the full scale, and had they not done the surgery there and then I would not be alive today. My oxygen levels are very low and I’m in a lot of pain. My heart rate had spiked several times after the surgery and I had to be brought back into theatre in case I went into cardiac arrest. My whole body looks swollen, retaining water, 3 times my normal size. I’m hallucinating, someone keeps leaving their empty pizza boxes on my table and the Nurses are doing nothing to find the culprit (apparently). But, I am making progress albeit slow progress, but progress nonetheless.

Over the course of the next couple of days and weeks, my heart rate reduces as well as my pain, the medication they have given me is keeping me comfortable and my stomach is working. However, my oxygen levels remain low, I’m diagnosed with dyspnea which is described as an intense tightening in the chest, air hunger, difficulty breathing, breathlessness often a feeling of suffocation combined with pleuritic chest pain, where the thin layers of tissue that separate your lungs from your chest wall become inflamed. After conducting numerous tests and scans it appears I also have pseudomonas aeruginosa, pneumonia.

I’m transferred to a ward and put in isolation. I’m black listed which would mean that I have covid but two tests prove that I haven’t but, the Doctors are requesting that I am given the same level of care and protection as those that would have covid due to my pneumonia. I have 3 tubes attached to my neck, on the right-hand side, 1 for food (Parenteral nutrition), fluids and another for antibiotics. An NG tube was inserted from my nose and threaded through to my stomach, to stop me from vomiting. And, a tingling sensation in both my feet and hands.

All the while I’m having the time of life high on painkillers and the hallucinations are getting more and more intense, I’m shopping in Costco now roaming the aisles checking out all the Kirkland’s own organic produce but I still have enough sense to let the Nurses know my urinary catheter is irritating me, it turns out I’m allergic to latex! Of all the times my hands itched from wearing marigolds, I could have gotten out of doing the washing up.

By the end of the month, I’m much more alert and I’m having physio to help me get back on my feet. The pins and needles are getting worse but that’s brushed aside as I contract 2 stomach infections at the same time. The first infection has to be drained from the side of my stomach, the hospital is so short of theatres I have my surgery in an X-ray room. The second is done by removing the stables underneath my belly button and a special gauze is left in soaking up the infection, it will leave a permanent scar causing my belly to go visibly inwards from the bottom of my abdomen towards my belly button. Talking about stitches, they had been left in for too long and so my skin had started forming around and over them, so removing them, one by one was very painful. Still, it was the least of it and I was making progress day by day, week by week.

November 2021 – Stoma

My stoma is working well and I’m getting the hang of changing it, it feels weird having to carry around a bag full of shit where ever I go as I have no control over my bowel movements. The occasional fart is let out while the Consultant comes to visit, I have no control and I can only apologise. Still, it’s keeping me alive and changing it is similar to changing a baby’s nappy and yes like nappies stoma bags will occasionally blow and burst.

After all this time of being in isolation, including times from when I was on the 11th floors months ago, I’m getting used to it making the most of it. Actually, the thought of being on the ward scares me a little. My social skills aren’t what they use to be, my confidence is shattered, I can barely recognise myself, my face, arm and legs are swollen, my hair falling, my beard was patchy, my skin was grey, who is this man?!. The thought of meeting new people outside my bubble is making me anxious, I suppose when you are used to seeing the same people day in and day out for an extended period of time, closed off from the rest of the world, it can be quite daunting to even think of going out.

Even now, as I’m writing this, I’m at home in a flat 3 floors up unable to climb stairs due to the nerve damage in my right leg. Sitting and waiting as Rapunzel did in her tower, that’s why I’ve called it Rapunzel syndrome. My only means of getting outside are for the NHS transport service to carry me down in an evac chair for my appointments otherwise I’m here looking down from my window as the rest of the world carries on with its day. More on this later.

The Surgeon comes to visit me and said he is pleased with the progress I’ve made, he thinks it would be best to discharge me and have me sent to a rehabilitation centre in Bishop Stortford to continue my recovery. I asked him about the “tingling in my feet”, as he so condescendingly put it, he said it could have been due to cancer or the cancer treatment but with physio, I should be able to make a quick recovery. He left to say he will be arranging my discharge letter, etc. Later on that day, I’m visited by Physio and I ask for their opinion on the issues with my feet and legs, cautiously he takes a guess and said it could be sciatica due to the lengthy time I’ve been on my back and off my feet. I call the Cancer Nurses for their opinion and they say it could be due to the surgery, as the tumour was larger than expected, it could have meant the Surgeons had to cut away at the surrounding tissue and nerves to remove the tumour. Nonetheless, it seems as if the rehab centre is making the same enquiries too as there seem to be some questions that have not been properly answered.

While it’s been some time since the Surgeon said I would be shipped on to rehab I’m told there appears to be a bit of a standoff between the hospital and the rehab centre. According to my Consultant, who visited me later in the week, the rehab centre has said they will not take me until the issue with my legs has been diagnosed properly and a plan of action has been written up. The hospital says it’s “phantom pain”, pain that does not exist but feels very real, and it will mend whilst in rehabilitation. I side with the rehab centre because it makes sense as the pains are getting worse and I’m confident it is not in my head. I don’t want to be moved because of my anxiety about having to meet new people and on top of that, my ward was in total lockdown so I haven’t had any visitors from loved ones for 2 weeks.

It took some convincing but the rehab centre, Herts and Essex Community Hospital, Bishop Stortford, finally decided to have me however, when I arrived they were annoyed as they had seemed to have been misled by how severe my pains were. The whole point of the rehab centre was to get me back on my feet through expert Physio and Dietitians what they actually did was to constantly change my medication to help control the nerve pain as it got progressively worse as time went on. There were talks of moving me back to Lister hospital but those talks broke down quickly.

The care at Herts and Essex Community Hospital was amazing. The Nurses took a real interest in me and asked me about myself, they learnt that I have two children, who meant the world to me, I hadn’t seen them since before the surgery.  Over six weeks had passed without any physical contact but I had my tab and we met over Whatsapp every night. The Ward Manager heard of this and said it was important that I saw my children, for my rehabilitation, and allowed them to visit one at a time, as I had a room to myself the rules were a little relaxed and they would stay for a little over an hour, 2 hours and then the Nurse had to ask them to leave. My Mum would come and visit too with my little sister, unfortunately, they would not be allowed in as I had a designated visitor, my partner, so they waved outside the window and we spoke over the phone while they were there. I was a floor up so they had to stretch their necks to see me but where there is a will, there is a way.

I had a huge room to myself and the rooms around me were vacant meaning the Nurses were not rushing around but there were things that needed doing so they kept themselves busy. One of the Nurses was kind enough to get me some halal produce for my dinners from ASDA. My room was also opposite the Ward Manager’s office with the door wide open, so if I was in any pain they would hear me and come racing out to see me and offer me pain relief and I could hear all the gossip, what’s a man to do with all this time?! And on my first week of being there, I sat on my chair eating rhubarb and custard while watching the Champions League in complete silence, oh the good life. I felt like the cat that got the cream.

But it didn’t last! After the night staff did its rounds my temperature rose to above 38 degrees celsius and I started to appear feverish, I felt fine but that could be the amount of pain killers coursing through my body. In the morning, the Doctors decided to send me to the nearest hospital as soon as possible, before breakfast! They sent me to Princess Alexandr Hospital, Harlow which seemed strange as all my records were at Lister hospital. This was a completely new and different experience. I was shoved into a room that could only be described as a cramped janitor’s closet with barely enough space for a bed. There were no windows and a stench of vomit and antiseptic filled the room. As a Nurse came in to attach a catheter I asked for some pain killers to which she replied “I cannot give you any as the Doctor would need to see you first”, I asked when that would be and her reply came as she was exiting with the door shutting behind her with “whenever he can be bothered”.

Hours later, I’m still without any of my daily medication or pain relief and still no Doctor but the same Nurse did come back and gave me paracetamol. I asked if there was anything to eat as I missed out on my scrambled eggs and strong coffee before being carted here. It was almost lunchtime according to my mobile which had no signal and no wifi either. She responded with “this isn’t a hospital ward, where am I supposed to get you food from?!”. I said nothing and swallowed the paracetamol and returned the cup to her, I sighed, my stomach rumbled, my stoma farted and as she walked out closing the door behind her she said: “don’t swear at me under your breath”. Before the door shut “DON’T YOU DARE ACCUSE ME OF SWEARING”, a fit of rage came over me as the shadow of the door grew larger I shouted, “HOW DARE YOU ACCUSE ME OF DOING SUCH A THING!”.

For those of you that don’t know me, I don’t swear ever, I’m like the Ned Flanders of Welwyn Garden City, it’s very rare to catch me swearing unless I catch my toe on the table or someone cuts me up at the roundabout (Darren!) but that doesn’t count as it’s in the car.

Hours passed by and while I re-positioned my mobile for the eighteenth hundred times to get a signal, from my bed, I finally found one pressing onto the outer wall, I called my wife and explained through my tears what had happened, I’d been shouting for help while I lay in bed struggling to move because of the pain I was in. Normally, for pain relief, I would have 2x  500mg paracetamols, 2x 600mg gabapentin, 30mg MST and 5 or 10 additional milligrams of liquid Oramorph, and by this point, I would have at least 2 servings of most of the medication. Here I was 6 hours in with 2x 500mg paracetamols rolling around in pain with no way of signalling for help except to shout and scream in the hope that someone passing by would hear my cries. I asked her to call the desk and have someone come in to help me.

When they did arrive I was given a second dose of 2x 500mg paracetamols and still no Doctor. I gave up trying, asking for pain relief I thought I would be stuck in there forever. I remained in silence weathering the pain and then came my knights in shining armour, the NHS Transport service. They ask me how I am and I spill over with emotion and snot crying, I was inconsolable. All I wanted was to get out of Harlow and back to my comfort of rhubarb crumble.

My brother had heard of my condition and he called the Site Manager who met me as I was being lifted into the ambulance. She was lovely and very apologetic she was going to look into what happened and why a Doctor was not able to see me and explained they had been very short staff and very busy. All of which I appreciated, I know all too well how difficult it is for the front line staff of the NHS as they have looked after me for many months.

Nevertheless, I was well looked after on the way back to rehab and I was so glad to be in the care of the Nurses at rehab once again. The behaviour at Princess Alexander Hospital, Harlow emphasises the shortages within the NHS and the tremendous pressure they are under to help so many people with all kinds of illnesses and demands. It also shines a light on the amazing staff at Herts and Essex Community Hospital and Ward 10 at Lister Hospital as the reason for someone to ever work in the NHS does so for the love of caring for others and wanting to help those in need, which I am truly thankful for.

November/December 2021 – Whatsapp

The Whatsapp group chat ‘Samad’s Road to Recovery’ is being hijacked with conversations about anything and everything, however this is the only means for the family to communicate with everyone all at once. It was time we rekindled the ‘Family Chat’ to discuss all things unrelated to my recovery; we had this long ago but people would yoyo in and out of it and then it just fizzled out completely. Families, you can’t live with them and you can’t live without them.

Honestly, though, I don’t know what I would do without my family. I mentioned before that I had neglected them for so long that my brothers and sisters became strangers. I didn’t make much of an effort because I didn’t think that they would understand where I was coming from and some of the decisions I took of late, before my diagnosis, would cause them hurt and anguish. In fact, most of my adult life caused a lot of shame on my family but it was my life and I wanted to live it my way without anyone’s permission, without any regret. Although, most of what I did was a cry for help. I didn’t know how to deal with my problems. But, my biggest regret was pushing them away, concealing my true ambitions from them and the truths about who I was, who I am and who I want to be. Because I thought they wouldn’t support me or understand. What I found was a loving, deeply caring and forgiving family who supported me throughout my fight with cancer and beyond.

There’s a quote from a book I have been reading since coming out from the hospital it’s called ‘The Book of Joy’ a conversational piece between the Dalai Lama and Desmond Tutu:

“Suffering can either embitter us or ennoble us and that the difference lies in whether we are able to find meaning in our suffering. Without meaning, when suffering seems senseless, we can easily become embittered”.

The meaning I found was family and I’m glad to have suffered to have finally seen that all I ever needed or wanted was right in front of me, family. That includes Mumma Lesley, one of my first subscribers and my fairy godmother.

I was working with the Physio to try and get myself back on my feet, I’m pushing myself too hard causing injury to an already broken body. Even now I can’t fathom what my body has been through each time I think about it my mind shuts down and reboots in MS-DOS mode. I’m being reckless, and the Physio knows it,  all I want to do now is go home. I spend most nights beating myself up as to why I’m not able to make the progress I need and want to so I get out of here, it all seems pointless as I’m taking more and more painkillers with every session.

Finally, on the 27th of November, I’m being discharged! I can go home! I tell the family and my brother thinks I’m joking. I’m racing to pack my bags and ready to leave as soon as the NHS transport arrives. I’ve heard those words before and been let down many times, as something always pops up to hold me back. But this time it’s for real. I take a video of me leaving, driving off in the back of an ambulance, as confirmation of my coming home. First, we drive to Hitchin to drop off another, elderly, patient and then we’re on our way, driving down the motorway to head on home. I sit at the back of the ambulance in silence, peering outside the window to look for anything familiar as a marker of how close we are to the flats of Layton Street.

We pull up to the Hatfield roundabout and then I see the big Tesco’s and I can hardly contain myself. I’m acting all cool in the back but inside I’m bubbling with the excitement of seeing my wife and kids, my brothers and sister and my mum. We pull into the car park and the driver and his colleagues leave the van and then there’s nothing, as if they’ve forgotten about me they’ve disappeared. I undo my seatbelt so I can look outside to see where they are and I can’t see anyone. I’m confused as to whether something has happened and I’m left sitting here until they come back. I actually think I’m dreaming and about to be awakened. Finally, the driver pulls the side door open and tells me “Sorry, we’ve been told to take you back to the hospital”. My heart sinks, my head falls to the ground, and I take a big gulp of air to hold the tears back. How! Why! What’s going on?! As I fasten my seatbelt the driver says “Only joking! Ahhhh I had you, didn’t I? No, all we needed to do was to check the stairs to see how best to get you up there, that’s all”. I nodded and played along signalling a pistol sign with my hands and a false laugh indicating ‘hahaha yeah you got me’ you wan*er! I mean, what sort of joke is that?!

But, the joke was on them, you see I can’t walk, I’ve been given a zimmer frame to help me get around and I sure as hell can’t climb stairs so they’ll have to carry me, in an evac chair, up 3 flights of stairs and with all the rhubarb and crumble with little to no exercise had made me much heavier then I was when I first went into the hospital. Who’s laughing now, sucker!

As they struggled to get me all the way up, they finally put me down in my living room, next to the sofa. They’re sweating and panting and barely able to say goodbye as they leave through the front door, I’m so grateful to be home. I’m hugged and kissed and smothered and I loved it! I curl up underneath my soft fleece blanket. Oh how I’ve missed this blanket, I’m bombarded with messages and the kids telling me how much they’ve missed me. There’s Cadbury’s Flake bars piled up high next to a card to welcome me home and a key ring that has ‘Star Dad’ embossed along the bottom with a star in the middle. Oh, how great it is to be home.

In the next few weeks, I’m visited by the Community Physio to continue my rehabilitation at home, she is lovely and patient and provides me with a bath stand and recommends I use a tens machine which helps with nerve pain, it’s what Will Smith has, it comes with some small sticky pads connected to a remote control where you can adjust the strength of electrical current disrupting the nerves and trying to get them to behave. It does help a little but I’m still in a lot of pain.

I’m also visited by my GP Dr Kabuubi from Springhouse Medical Centre, she is amazing! She looks at all the medication I’m on and is disappointed, to say the least, as to what I have been prescribed and she’s perplexed as to when I have been told to take them. For example, I’m on antidepressants which I was given in the morning which are actually sedatives so no wonder I’ve been sleeping in the morning and have been drowsy during my Physio lessons. So, she changes them to be taken at night. Plus, she put me on stronger and cleaner versions of morphine that don’t upset my stomach and cause me to become nauseous. I’m now on the maximum dosage of Gabapentin, which helps with the nerve pain and I’m still in a lot of pain.  She is sending referrals left, right and centre to try and get to the bottom of my nerve pain. Like I said, AMAZING!

Alongside my Oncologist, she is recommending that the family get tested for bowel cancer as it can be hereditary. My Oncologist, Jackie Hayward is great. Apparently, we had already met in the past pre-surgery but I honestly can’t remember. We discuss all that is going on with me and as much as she wants to get involved she thinks it would be best to draw lines of responsibility. I’ll be meeting with Jackie every 3 months for the next 5 years having regular scans and blood work to make sure that I’m in the clear and if anything was to come up she’s on it before it gets out of hand.

I may be back at home but I’m not out of the woods just yet, spending the next 5 years looking over my shoulder and the possibility of others having to go through what I had, God forbid.

January 2022- Pain in the arse

Every morning is a struggle, as soon as I wake I’m greeted with an electrical charge being sent up from my foot up to the bottom of my spine, as if my nervous system is misfiring signals from my foot to my brain which are being rejected, unable to decrypt what the foot and leg is trying to tell the brain so it’s sent back down my leg causing more frustration as each discharge grows stronger, the foot and leg shout louder. My calf is cramping followed by intense, throbbing pain, it’s dehydration followed by growing pains and the electrical charge all going off at once.

There’s a firing and popping sensation on the sole of my foot I can feel it bubbling along the bridge of my foot. Yet I look at it and the skin appears normal so why do I feel as if the skin of my foot is set on fire by the fabric of the duvet cover brushes along the skin as I twitch and jerk with pain trying to conceal my mouth so I don’t scream and scare my children who are asleep next door. My toes are limp I can’t move them and I can barely lift my foot up as the muscles have fused around my ankle. As I walk my right foot drops it drags behind me where ever I go.

I’m lifted up by hugging my wife’s midriff and pulls me up to sit on the edge of the bed. As my bottom hits the rim of my Emma mattress a sharp pain shoots from my tailbone all the way up to the cervical vertebrae forcing my chest to push out and my shoulder blades to squeeze, followed by a loud outpour of pain and distress as my wife brushes her hands across my head with a shushing noise which brings little comfort but comfort nonetheless.

I can barely close my right hand which is forced open in a claw as it cramps, pin and needles from the elbow down to my little and adjacent finger. I force it to close and reach out to the plastic cup on the bedside table filled with medicine to help me get out of bed. The pills are piled high taking about a quarter of the cup I take it in one hit and wash it down with a large glass of water.

I wait for approximately 20 minutes for the painkillers to kick in so I am able to stand and make my way to the living room using the frame the Physio has given to me. I also use this time to tap my feet on the floor to try and get the circulation going and the feeling back into my legs so I can stand without losing my footing. All of this and I haven’t even had my morning cup of coffee.

The funny thing is I’m only registering this now, as I write it whereas before I was, for the better word, ‘going through the motions’. And, it wasn’t the pills that I craved most during the mornings, it was the hug, the gentle strokes on my head, someone to tell me ‘it’s ok’ without speaking. The validation that it was alright to show I was in pain. The pills are what I needed to get me going but the comfort of having someone who cares and gives so much is something that I could not do without.

The Physio is visiting weekly to try to get me to move and walk independently, it’s going badly. I’m pushing myself too hard, masking the pain, to make progress for progress’ sake, I’m given a walking stick but I’m sticking with my frame. I’m not looking after myself and causing more injury and as soon as the Physio leaves I dose myself with painkillers and curl up on the side of the sofa waiting for the pain signals to relax.

The Oncologist calls with news on the tests they’ve been running on the tumour, and they confirm that I have Lynch Syndrome. Lynch Syndrome is hereditary and the chances of other family members having cancer are very high and most likely to be diagnosed at a younger age. It also means that I am at risk of developing other types of cancer too during my lifetime. My Oncologist advised me to tell my 4 siblings and have them tested as soon as possible. Those that are over 35 years of age should have a colonoscopy booked through their GP and those under should have their blood taken, everyone should be screened often to detect it early so it can be treated as soon as possible.

It’s terrible news and my brothers and sisters are talking to their GP about the next steps but I am relieved too as the family will be on high alert with their GP practice and not endure all of what I went through during the early months of having cancer and fighting for a blood test to confirm I wasn’t crazy.

I’ve also decided to start a blog about my fight with cancer but I keep putting it off. I talk it through with my wife who thinks it’s a great idea but I keep asking myself ‘who is going to read it?’, “why are people going to read it?” “It’s just me waffling on about what I had to go through”. Will people see it as a way of promoting myself? That I’m self-indulging, being pretentious over something that others cannot relate to or are not interested in. And, if I’m honest with myself, I’m nervous about putting myself out there after being so coy about my illness, no one outside my family and very close friends knew about it. I’m out of my comfort zone and out of my depth just thinking about it. Will my style of writing go down well with others? I make so many spelling errors, what if it doesn’t make sense? But, my wife said if it will help just one person out there dealing with cancer or a loved one who is trying to understand what they are in for then do it, it will be worth it. And, that is why you’re here and I thank you for reading my blog and cheering me on.

February 2022 – Beating myself up

They say those that have felt death touch or been at its door revive with an epiphany, they suddenly know what they are going to do for the rest of their lives. It’s as if God had touched them and suddenly they are a messiah for just cause. God’s hand rested on their head and he said “go forth wit” and poof! They come back to life to fulfil their mission. Meanwhile, I’m stuck underneath his boot waiting for him to scrape me off and leave me among the living dead.

The pain I had been experiencing is getting worse and I’m beating myself up for being like this. I feel an enormous amount of pressure to get up and live a normal everyday life, to help around the house, to walk down some stairs and out that door, and to provide an income worthy of my life goals. I want to exercise, run and be free. The stoma bag is like a shackle that’s preventing me from moving forward, preventing me from even being able to support my family in any way. I never thought I’d become a couch potato, I look in my wardrobe and the only thing that fits me are my pyjamas and jogging bottoms. I refuse to buy any clothes as a statement that I will not accept the way I look and feel, it’s stupid I know but I cannot find myself to look in the mirror and show any empathy for what I have become.

When I look at social media I see brave people with photos of themselves and their stoma in their gym gear and I can’t help but think why am I not able to stand independently to even take a photo? My legs wobbles, my right foot arches into a heel to find balance and to restrict the pain of putting the sole of my foot on the floor. I have to plan my route from the bedroom to the living room, what am I going to hold onto to walk through the hall? What do I grab on to if I fall? I know I should use my frame but I’m stubborn and I convince myself that the pain I’m experiencing is a sign that I’m getting better.

The family are filling in the forms and talking to their GPs about being tested, I cross my fingers and hope to God that they get the all-clear. Regardless of the results, they will be tested every 5 years for cancer for the rest of their lives.

The blog is out there on the world wide web and I can’t stop thinking about what I’ve written. I keep reading it back and forth, back and forth looking for any spelling mistakes, rephrasing almost every sentence and changing the way it has been written. I feel vulnerable about putting myself out there and my anxiety levels are so high I’m sweating on a cold winter’s day. And then, suddenly, while I’m thinking about pulling the plug I get my first subscriber to the site, followed by positive messages on my social media, people telling me about how sorry they are to hear the news and how eye-opening the blog is and how well it is written. More and more people are subscribing to the site which puts a huge smile on my face and motivates me to carry on. It’s mainly family and friends at the moment reading the blog but it was never about the number of people subscribing, it was the message that the blog carried.

Dr Kabubi calls and said she had been on holiday but couldn’t stop thinking about me while she was away. She had a thought that some of the symptoms I had been describing were similar to what her brother had experienced when he had a blood clot, she arranges for an ultrasound the very same day but after checking the entire leg and connecting blood vessels I get the all-clear so were back to square one.

One evening my mum comes to stay with us and my leg is bone cold, my foot feels as if an elephant is sitting on it and my calf is violently cramping, jolting my leg and sending my foot into acrobatics. I’m rolling in pain while my mum tries to calm me down she’s helpless to do anything to reduce the pain. My wife is frozen unable to offer any support and gives me the maximum dose of painkillers. She calls for an ambulance, the operator said it will take over 2 hours for the paramedics to arrive, it’s a busy night for them as the Covid restrictions have been lifted and people are overindulging. Meanwhile, I’ve passed out because of the pain and when I woke up 4 hours later and there was no ambulance. She calls the paramedics and cancels, there’s no need for them, the pain has passed and I’ve had all that I can of the liquid morphine and I go back to sleep

March 2022 – Carry me home

I’m headed for a routine CT scan, I have to call for the NHS Transport service to carry me downstairs and drive me to the appointment. I’m used to it by now and as I sit down onto the foldable chair and cross my arms with my hands on my shoulders the Transport team breaks out in laughter calling me a “regular….. He knows the drill” with a point of the finger and a wink of an eye. Sitting on a small foldable chair, which operates in the same way as a small heavy-duty hand truck, the ones where you tip it towards you as you take it onto two wheels at the back and I’m set at an angle through the corridor. As we come to the stairs one person is carrying me from the front and the other from behind, hoisting me high, I’m almost vertical at this stage praying that they don’t drop me. Each floor gives them a chance to catch their breath and we go again, all this down three flights of stairs I really do feel sorry for them. At the bottom, a joke is always made about them not needing a gym pass and then I’m loaded into the van like the furniture to a removal company.  As I’m airlifted to the van, which is identical to an ambulance, I’m hoping the neighbours don’t see me and that they don’t jump to any conclusions, as if I’m being rushed back into hospital because I’ve taken ill, again. You can see the curtains and netting twitching at the windows from the usual suspects, their silhouettes of someone looking out their window to see what going on.

The appointment is at the QE2 hospital, which is a stone’s through away from where I live, in fact, it takes longer for the NHS transport to come and carry me down to the van than it takes to drive to the QE2. Anyway, I need it so I’ll use it. As we arrive at the QE2 the driver is on the hunt for a wheelchair, I should invest in one but I don’t want to rely on it as I know I’ll get lazy and never walk again. I’m able to walk short distances, the furthest I could go unaided would be from the bedroom to the kitchen (I say “unaided” but I really mean; by bouncing off each wall, clutching every doorway and crevice for grip, and I swing myself through to each room. Imagine Spider-man was midway climbing walls and suddenly he lost his ability to stick, that’s me). I wouldn’t be able to get around an entire hospital. Luckily, they find a comfortable chair and wheel me to The Imaging, X-Ray and Radiology department. I’m in and out of the scan in less than an hour and I’m waiting for another team from the NHS Transport service to come and collect me.

My wife is with me and we grab a coffee and a bite to eat from the hospital’s cafe, we’re enjoying each other’s company while we wait for the NHS Transport. Sitting outside and socialising is something I sorely miss, going out for coffee is something I use to do on my days offs and I’m enjoying every minute of it. It takes about 2 hours for someone to come and collect us but we have time to kill and the conversation was nice, we spoke about our children and plans to move into a house.

We had looked at privately renting a larger property but as I’d been off work for 10 months and my partner not earning much from her Teaching Assistance role we wouldn’t be able to get one so, we decided to go down the Council route. We had put in an application for a property with the Council’s Housing team at the beginning of the year and our case manager had asked us for letters, bank statements, hospital notes etc. and had asked for it in drips and drabs rather than all of it together. She had all that she needed after about 6 weeks and told us to check online for an update on our banding. Everyone looking for a Council property is put into a ‘band’ which ranges from A (being the highest/most urgent need) to F (not-on-your-life chance of getting one) of which they can place a bid for a property online. We were in band F and when we did chase the application we were told our banding had not been updated but will be online, we couldn’t be told over the phone as to what band we should be in, all we knew is that it wasn’t F.

We continued to log in onto the Council’s app and nothing had changed, our case manager was adamant that it had on their computer but again couldn’t tell us what band we should be in. We were told to bid but our bids were cast into the ‘not considered’ pile all the properties, so something had to be wrong. We contacted Citizen Advice Bureau and a helpful gentlemen took us through a mock exercise which will determine, roughly, what band we should be in. After answering all his questions and taking on board my situation and the letters we had sent to the Council he was perplexed that we were only band F, he said that we should be at least band B. He advised us to call the Housing team and have them explain why we were so far from their suggested banding.

We called the Housing team and we got through to someone else, not our case manager, now normally if a case manager was not there they would tell us to call back to speak with her. However, on this occasion, the lady was kind enough to take a look,  she sounded more senior and more willing to look into why our band was so low. A short while after we explained our situation she saw what the problem was; my name was not on the application. A silence fell after she said that, a tumbleweed moment, followed by an onslaught of “WTF”, “you have to be kidding me”. “No way Jose!” “Ah.Ah”. “Are you talking to me? I think she’s talking to me!” “Not on your life, pal!”. Now this Pooh Bear was mad, you wouldn’t like me when I’m mad.

Most of the documentation that we had sent to our case manager had my name on it, there were hospital notes, letters from my GP, Physio, Neurologists and Specialists explaining my disability in detail and now we were being told our application was null and void. Why were we not told of this sooner?! We asked if they’ll be able to add my name to the application but, apparently, it doesn’t work like that. We have to start the application again, fresh, all over again. It was a typical “computer said no” moment. The woman was very apologetic and demonstrated a great deal of empathy for our case but we couldn’t “pass go” let alone collect our £200.

Shortly after we submitted our application, again, A cousin of mine came to visit, he has his own business and wanted to help promote awareness on the upcoming bowel cancer awareness month (April). He asked if we had been looking for a better-suited property. We explained what had happened with the Council Housing team and he was livid. He spoke about the issues with his local Council and advised us to get in touch with our Local MP or Councillor and ask them to help with the application. We said we would try, we have nothing to lose, so we found out who our Local MP was Grant Shapps (useless) and our local Councillor Margaret Birleson (amazing). Margaret was straight on the phone with me asking me to provide her with more details about the application and to give her permission to speak to someone senior in the Housing team. We gave her outright permission to take on our case and within a short time, a senior member of the Housing team called and asked us to forward all our paperwork to her so she could review and handle the case personally. We felt confident that someone was taking our case seriously but a few days later we were told the paperwork provided by the Physio, Specialist and GP does not state that I am unable to walk down and/or climb stairs. I argued that the letters stated clearly that I need a frame to get around and the Physio and I did try stairs but I was unable to progress any further and it was decided that my physio lessons would be on hold until the pain could be better managed. But, it wasn’t as black and white so it felt like we were back at square one, we were still at Band F and all this seemed like a complete waste of time.

Until my son’s diagnosis had come through. For quite some time we suspected that he had learning difficulties and showed signs of ADHD, and after 18 months of waiting for an ADHD assessment, he was finally diagnosed with ADHD. Social Services had been in touch and after finding out about our housing arrangements and Musa’s needs and also took a keen interest in my health. After speaking to them about my illness and disability they arranged a home visit and assessed each of our needs and, most importantly, stated clearly; that I could not do stairs in the report. We finally had what we needed for the Housing team to change our banding and to our surprise, we were placed in band A. Meanwhile, Grant Shapps’ secretary called to say our email will be forwarded to the relevant team, what a waste of time. Anyway, you might think that this would mean we could get a house quite quickly but you’d be wrong to do so; we are still bidding and failing to secure a property but we understand that there will be those in situations far worst than ours and that they are in desperate need of a roof over their heads so we’ll wait and continue to place our bids on a suitable property. Fingers crossed we’ll be in a property that better serves all our needs.

My Oncologist calls to say my CT scan results have come back; there are anomalies within my right chest cavity, something that wasn’t there before but could be related to the staph infection I had last year. She arranges for a PET scan to rule out cancer but knowing my luck it could be more bad news. I had lost all optimism by this stage, life seems to have dealt me the worse hand at every crossroad and junction, every time I thought positive about a possible outcome I was given the worst case possible, but I am alive. Also, some of my siblings were having trouble with their GP over testing for cancer,  their GPs were very dismissive as most of my siblings are younger than me but I ask them to insist on at least a blood test as my Ongolist said it is important to rule out any chances they may have cancer and the earlier the diagnoses the better the chances.

I have a meeting with work called an LTS (long term sickness), I’m meeting my manager Jen and Craig from HR and the mood is positive and they are so understanding towards what I am going through. I downplay my pain levels, I talk in strict medical terms and I tell them that the main reason I’m not able to work is because of the amount of medication I’m taking and the side effects I’m suffering from, mainly the drowsiness. I hate these meetings, I’m overwhelmed with anxiety and my imposter syndrome kicks in, I say that I’m doing well when I’m not and sedation from the medication is the least of my problems. I leave the meeting wondering why I didn’t tell the whole story; I wake up with excruciating pain, I’m in agony every day and the medication is not just making me sleepy but also messing with my head; I’m confused and have trouble remembering things, I don’t even know what date it is.

I forget whether I took my pills in the afternoon when no one is around, so as a precaution I don’t take them so I don’t overdose. I’ll find out later if I hadn’t taken them as the shooting pain begins and ends with me rolling around clutching my leg. If it wasn’t for my wife asking Alexa to set a reminder for me to take my pills and that lunch is in the fridge I couldn’t confidently say that I’m looking after myself. I sit on the sofa every day from 8 am – 10 am my body won’t move between these hours as the morning meds course through my system numbing, I sit curled up in bed under the blanket waiting for the ride to finish. By the time I’m able to gather my wits I make my cup of coffee, I can’t even stand long enough for the kettle to boil; I have to sit on the circular oven door handle to relieve some pressure on my right foot. Once it’s poured I hop back to the sofa trying desperately not to spill the smouldering coffee and when I’m seated comfortably on the sofa with my legs up I take a sip of my coffee and guess what, yes, I forget to add sugar. So why don’t I say it like it is? Why hide it from my employer? If I really think about it, it is all about job security. I don’t want them to say that I’m not fit to come back or relocate me to another job or another location.

I don’t want my manager to think of me any less than who I was before and that I am committed to coming back to work, one day. I love my job! It may not be everyone’s cup of tea but when I was first asked to join a Project Management team on secondment I had no idea what I was getting into but then I met Tim Manns and I was hooked (BTW – thats California Dreaming playing in the background). He was so passionate about it and even conquered his fear of education, which we both share, and he passed the PMP course. I asked him what is he looking for in a Project Manager and I worked on becoming exactly that. Plus, I didn’t want to climb the management ladder, although I felt I was very good at managing people and getting the best out of them (big-up Iced Gems), I loved delivering a motivating speech and collecting data to increase performance but I didn’t want to manage people anymore. I wanted variety and the opportunity to build something with different people and not have to sit and discipline someone for being late or going over their toilet allowance and forgetting their headset.

I spent two years educating myself by renewing the same book from the library over and over again, Dummies Guide to Project Management. And then, after several failed interviews, working on the feedback, I got the same job I applied for 2 years previously. It was as if fate came and kissed me right on the lips and said “you deserve this you sexy beast” and I was a Project Manager. So why did this cruel mistress betray me and caused me to become a shadow of my former self?! Her cherry flavoured chap stick still glissing on my lips so, what did I do to deserve this? With so much time to myself, I often ask these questions and wait for a sign or a response from The Almighty and although me and the big man hadn’t spoken in some time, since my diagnosis, I still believe He did this for a reason. I felt like someone who hung his cape and exchanged it for a grey velour dressing gown and some sheep skin moccasins. Why can’t I say I’m struggling and having a hard time accepting who I have become?

My wife has decided that she’ll be raising money for Cancer Research by walking 10,000 steps every day for the entire month as part of their Walk All Over Cancer campaign. At first, she aimed to raise £100 which was a reasonable target but she decided that ‘reasonable’ isn’t good enough so she wanted to raise more and set herself a target of £500, as she said: “go big or go home”. She tracked her step count on her Fitbit Versa 3 (which I bought her for her birthday; husband of the year!) and went to social media and all the different mum WhatsApp groups she is a part of and she recorded her progress for everyone to see on a daily bases. She wrote her own piece about her Walk All Over Cancer campaign and if you wanted to see how she did click the link below to view the Fundraiser page.

April 2022 – Familiar

I’m picked up from the flat by the NHS Transport service, and when I say picked up I mean actually lifted in the air on a flimsy foldable chair and carried down 3 flights of stairs. I’m met by two familiar faces, it’s the same crew that picked me up from Princess Alexandr Hospital, Harlow after that terrible episode in A&E of being locked up in a cupboard. They tell me that I look so much better than I did the last time they saw me, I tell them that they are being too kind but I do feel a lot better as I’ve taken 10ml of the liquid oxycodone to help with the pain I’m in and I feel as light as a feather and as high as a kite.

I take the mandatory position in the evac chair a little chuckle comes from the crew, and my wife makes a comment “he’s a regular” well someone had to say it. As I’m lifted in the air and down the stairs, I could swear that the seat was tearing as I felt I was going to go right through it onto the jagged edges of the stairs. Luckily I made it in one piece and I’m in the van off to see my Neurologist.

We arrive at Lister, I’ve fallen asleep in the back of the van, oxycodone will do that to you, the crew try not to wake me as they go on the hunt for a wheelchair. I know, I know I should invest in one but as I’ve already mentioned I don’t want to rely on it to get around as I will never get back on my feet again. The crew are kind enough to wake me politely and wheel me to the waiting room, they check me in and we say our goodbyes. The problem with oxycodone is when you do wake you are still in a dream state and knowing what is real and what isn’t can prove to be tricky. I imagine empty pizza boxes left beside me and Dame Julie Dench is waiting beside me. I stare at her and as I raise my hand with my index finger forming to poke her my wife slaps my wrist and tells me to “stop it!” I turn to her with a sour face hissing like a wounded cat, clutching my hand and I turn round to Julie Dench and it’s someone different entirely. Suffice to say the man who appeared to be Julie Dench got up and sat elsewhere but I couldn’t help peer over to her or him from time to time.

I’m called in to see the Oncologist but I find that it’s not the same man that I saw before, I look to my other half and say to her “I’m still seeing things, it’s not the same person we saw last time”, she tells me I’m right it’s not. I raise my eyebrow instinctively, bemused by what is real and what isn’t. I lean forward and ask the gentlemen “how do you do?” he replies “very well, thank you. I’m Doctor Zandi, now your Oncologist is not in today so I’m covering his appointments until he’s back”. He goes on to tell me that he resides at the Queen’s hospital in London, the centre of Neurology and was quite keen to see me after looking through my notes. I give him a background of what had happened to me and my wife filling in the many gaps my mind had tried to forget. He asked me to lay on the bed so he can physically examine me to understand the extent of my nerve damage. After a series of pushing and pulling of the legs, foot, toes and hands he sit down to give his initial thought, in his word;

“Progressive weakness particularly in the right leg, leading to excruciating pain. Grade 2 power in the right foot, grade 5 being normal power. The likely cause could be peripheral problems with nerve roots and/or nerve ends. Inflammation of the nerves could also be the result of cancer and/or the treatment or medication prescribed I.e oramorph, long tec, oxy form”.

Dr Zandi is concerned with the numbness of my toes and part of my feet and that I am unable to lift my right foot up. He’s concerned about the speed at which it went from a tingling sensation in my feet to now numbness and pain. He feels it would be best that I should be admitted to Queen’s hospital. He suggests coming in as a day patient so that I can have all the tests done and then go home on the same day and, if there is the need to carry out further tests then I can come in and repeat the cycle until they have all they need to get the job done. He spoke about having a full-body MRI, lumbar puncture, nerve conduction tests and possibly nerve biopsies. To do this as an outpatient could take almost a year but as a day patient, I would be admitted to Queen’s hospital with a bed and the fact that they could do all that in one day is truly remarkable.

The thought of being on a ward again made the hairs on the back of my neck stand up and chill down my spine like when Will from Stanger Things get that feeling of the upside-down, I’m having flashbacks of being in isolation again. Dr Zandi goes on to say if the numbness and pain are left untreated over a long period it could result in it becoming permanent and incurable. With that statement, I agree to be a day patient and so we leave with a sense of optimism that Dr Zandi has taken ownership and that in the near future I may be able to get back to a ‘normal’ life and I feel a tremendous warmth in my tummy, no wait……….. that’s my stoma bag bursting, shit!

My cousin wanted to do something for bowel cancer awareness month and so we brainstorm some ideas of how we can spread the good word and donate to a chosen charity. His company (Corker Cars) has already done so much for the community they had won the Community Orientated Business Of The Year for their ‘Cabs for Jabs’ initiative and the finalist for the Frontline Worker Award at the Mayor’s Pride Awards in March 2022. He decided that he will donate 50p for every booking on their app from the 10th of April until the 10th of May 2022. So we took to social media to spread the word and collect donations and I have to admit the engagement from the public was amazing. If you wanted to see how they had done please visit the Fundraiser page.

The Pain Clinic has finally come back to say they will see me on the 13th of April, after waiting 3 months for a referral, I was quite lucky as I was told it would take at least 6 months for an appointment. They’ve also been hit hard with Covid as many appointments were pushed back or cancelled. It would mean that I would have to travel further to North London but at least I’ll be seen by someone quickly. Also, the PET scan has been arranged for the 14th of April to rule out cancer in my right lung cavity. And then, I get a phone call from Queen’s hospital to say they have a bed available for the 12th of April, it’s true what they say; you wait for an age for a bus and then they all turn up at once.

I am back with the NHS Transport team on my way to Queen’s hospital which is the UK’s largest dedicated neurological and neurosurgical hospital. It’s at the cutting edge of neurology with equipment that no other hospital in the UK has at its disposal, like the only interventional MRI scanner. Adjacent to the University College London (UCL) London’s global university tackling some of the world’s greatest issues, situated on Great Ormand Street this truly is a global hospital that lives up to its name. Or, at least that is how it was pitched to me.

I arrive at Queen’s hospital around 11 am, the hospital feels old with its high ceilings and small corridors, only wide enough for one bed. Even in a wheelchair, you feel you have to tuck yourself in as traffic goes in two directions. Like a country road where you lean on the verge to avoid colliding with the oncoming cars. There are so many wings and each lift takes you to different parts of the building finding the right lift is like finding station nine and three-quarters for the very first time. We ask for directions from staff who point us in the opposite direction from which we came as if the hospital was moving, shifting in different directions unable to stand still long enough for us to find it. Finally, as we go back on ourselves in a smaller corridor is the lift we need, as we peer over we see that it was around the corner from the reception desk near the entrance, all we had to do was climb a few stairs but as I’m not able to do so we went the long way round. Stairs! These fu’king stairs!

As soon as we come out of the lift is the door for the ward where I will be staying for the day. I’m allocated a bed and shortly after settling down Dr Zandi arrives with 2 junior doctors. He introduces them and – to be honest, I forgot their names, let’s called them Junior 1 and Junior 2 – and Dr Zandi then goes on to say they will be looking after me and looks at each of the junior doctors and asks them “what have you booked him in for?” of which they reply “nothing”. My gaze turns to Dr Zandi as if to say ‘WTF’, of which he looks to his junior doctors and asks “when can we get an MRI done?” they say “two or three days”. I have to interject “I’m only here for a day, that was the agreement”. My anxiety is heightened, I’m sweating with my own body heat radiating from my chest, my breath getting tighter and tighter, and machines are buzzing all around me, ‘I can’t do another day in the hospital’ I tell myself. Dr Zandi can see that I am anxious and tries to calm me down and tells his junior doctors that they need to arrange an MRI tomorrow and as many tests as possible. He looks at me and releases he hasn’t even asked if that would be OK with me. I tell them that I have an appointment with the Pain Clinic which I waited 3 months for and his response was “if we can do the test and figure out why you are having these issues and cure them there would be no need for the pain team”.Touché, it made sense but staying in the Hospital is my worse nightmare, I’m already having flashbacks of when I was fighting the staph infection but I know this is the best course of action and he’s right. I agree to stay but I insist on leaving tomorrow so I can attend my PET scan at Mount Vernon Hospital, Northwood. Dr Zandi agrees the PET scan is important and makes it very clear to the junior doctors that I must attend the PET scan.  He asks me to pass on the details of the Pain Clinic to Junior Doctor 2 and I show him my phone with all the details, he starts to ask stupid questions like “who and I calling,” “what am I telling them,” “have you got a phone number for them”. I tell him I’ll do it as it seems that the way the conversation is going. I also give him a list of medications I’m on as I only have enough to last me the rest of the day. I call my wife and kids and tell them the news, they’re disappointed but they understand. I settle in for the night fortunately, I brought my charger with me and I have enough stoma supplies to last me a couple of days however the spray I use to dissolve the adhesive to remove the stoma bag is running low.

I wake up in the morning and I’m sent downstairs for a nerve conduction test. This is where they attach sticky pads along your nerve channels and hit you with short intent blasts of electrical energy and record the feedback on the computer. They also put a long thin needle into your leg, in between the muscles and ask you to tense as they push waves upon waves of electricity down your leg. It’s like a meat thermometer attached to the living leg of a lamb. It hurt!

When I arrive back at my ward twiddle-dum and twiddle-dee (I’ll get on to why I call the junior doctors this) come and see how I am and I tell them that I’m looking forward to doing more tests and getting out of here later in the day. They laugh with me unaware of the fact that I had already done the nerve conduction test. When they are told that I’ve already been to do the test they say to each other that one of them needs to cancel the request they had just put in. They want me to do an MRI which they hope they can book later today other than that I’ll just be waiting. As the medication is being dispensed I’m missing a lot of painkillers from my morning dose, the Nurse said that everything the doctors had prescribed to me has been given but I correct her by showing her the list I gave Junior Doctor 2. She tells me that she’ll need to take it up with the doctor so I’ll be here rolling around in pain for some time. I ask her if I’d been booked in for anything else she tells me I have an MRI booked for this evening at 7 pm which I thought was quite late considering I needed to be home ready for tomorrow’s PET scan. I take what she gives me and lay back in the bed waiting for the rest of the medication which came a couple of hours later.

After lunch I’m sitting in the chair thinking, sensing something is wrong so I ask the Nurse if I can speak to a doctor she asks why I tell her I want to discharge myself, jokingly. Both junior doctors come round and I ask them about the MRI being quite late in the evening and when the transport has been booked for. They tell me that the transport hasn’t been booked and that I’ll need to stay here another night to which I replied “so you’re going to arrange transport to come here and collect me and take me to the PET scan and then bring me back?”. They said they will look into it and disappeared. Hours had gone by and still no news as to how I’m getting to my PET scan, I had already asked the Ward Nurse to try and find the Stocare spray for my stoma, and I’m worried that I’ll run out by the end of the day. Needless to say, she had disappeared for hours too. I asked a Nurse I saw walking past if I can speak with a doctor and again the same question “why?”, to which I respond with the same “I want to discharge myself”, only this time I’m not laughing. Junior Doctor 2 arrives and tells me that they can’t arrange transport from Queen’s to Mount Vernon but they can offer me a ‘day release’ whereby I can go home and then attend my PET scan but I will have to come back here to Queens straight after. I agree with it, it makes sense to carry on the testing as more does need to be done and so I ask when will I be collected to go home? Junior 2 responds with “you’re not entitled to transport under the conditions of a day release”. Even hospitals have T&Cs. I ask to speak to Dr Zandi but he’s not around. I try and explain to the Junior Doctor that I need someone to carry me up the stairs because of my disability, because of why I am here but he’s not interested. I try and plead with him, that I was only meant to be here a day but because nothing had been booked in I agreed to stay one more day as Dr Zandi had said, as he agreed. Dr Zandi had said I must attend the PET scan, I tried to tell the Junior Doctor that I may have cancer but the Junior Doctor wasn’t interested he said that there are more tests to do and I would need to remain here until all the tests have been completed. So I asked him, “What are my option?”

“You can stay here to do the tests and once we are done you can go home with the transport team or, you can take the day release and make your own way home but you must come back here after your PET scan”

“Or”

“Or, you can discharge yourself”

“I do that. I’ll discharge myself”

“Why? Going against medical advice. You won’t be entitled to transport”

“Because I have a PET scan to go to and if it means being relieved of your duty of care then so be it”

“Fine, I’ll get the forms”

He went off and I looked around the wards with everyone silent and looking over at me but I didn’t feel embarrassed, I took a deep breath and sent a message to my family to say I’m coming home. As I’m packing my bags my wife calls to ask what is going on, I explain to her everything that has been said and she’s angry. She said she’ll call the site manager and speak with them and call me back. Meanwhile, the Junior Doctor comes back with the Ward Sister and we replay everything that has already been said. I guess he needed a witness. I sign the forms and carry on packing my bags and as I finish Junior Doctor 1 pays me a visit and is sympathetic towards my cause, he said he “understands why I want to attend the PET scan” and “why I want to go home”. So I ask him if he could discharge me but he flakes and said he can’t go against the other Junior Doctor. It’s all words, picked up in a customer service handbook, something I used in my time working with John Lewis and Ocado. The Junior Doctor leaves and I’m sat on the edge of my bed hands coverings my face and I start sobbing thinking ‘why did I ever agree to this’. I imagine myself storming out of here but the truth is I can’t even walk to the door without some sort of support. The Ward Sister put her arm around me and said “if by 8 o’clock you haven’t got a lift let me know”. Bless her. I check to see how much it would cost on an Uber, £63 and I start to hatch a plan; if I sleep in the car tonight the transport service will collect me tomorrow morning and then they’ll collect me from Mount Vernon and can carry me upstairs to the flat.

Before I could book the Uber I wait to hear from my wife, she calls and she’s has spoken to the Site Manager who Is very understanding of the matter and agrees I should attend the PET scan but she explains that there is no link between Queens and Mount Vernon. He agrees to arrange transport but I will need to attend the MRI at 7 pm. I agree I haven’t much choice so, I settle in and I try and calm down, by this point the doctors had gone home and the night staff were settling in. I go around the ward asking patients and staff; what would they do if they had cancer or nerve pain which would they consider treating first and all of them said cancer. Nerve pain they could live with but cancer they can’t, and yet the Junior Doctors felt that matters of nerve pain takes precedence over cancer. That his field of expertise was more important only because he was practising it. Nonetheless, I was going home. By the time I arrived at the MRI I was a bag of nerves, the adrenaline was still coursing through my body and my anxiety levels reached new heights. The Consultant at the MRI theatre was doing his best to calm me by teaching me some breathing techniques and asking me to visualise being on a paradise beach, yet all I could visualise was Martin Larence in Bad Boys going ‘woo-sa’. I couldn’t stay still so we had to scratch that one. I returned back to my ward deflated and disappointed and left waiting for the transport. My wife was told I would be collected at 8 pm but that was wishful thinking. The people on the desk chased them through the night and at just gone midnight they arrived and I was back at home at 2:30 am.

The next day I’m strapped into the chair and off we go again, down the stairs in the van and off to Mount Vernon Hospital as if nothing even happened. I do the PET scan and then shipped it back home in time for supper. That’s how it’s done! The results come back and I haven’t got cancer, the anomalies in my right chest cavity are likely to scan tissue from the staph infection but it will need to be looked into further.

My wife managed to rearrange the Pain Clinic for later on in the month and it’s a flying visit, the Doctor sat me down we went through all my symptoms and she gave me a muscle relaxant for the cramps and more medication for the nerves which I can start taking in the 2 to 4 weeks. All of these came with a warning ‘may cause drowsiness’. Great, even more sedation. It’s all I seem to be doing is sleeping or in between sleeping and waking and if I’m not I’m in pain. I guess it’s the lesser of evils I have to battle with.

Dr Zandi is on the phone, I was reluctant to take the call but I figured none of what happened was his fault so we had a chat and he was very apologetic towards what happened and went on to say my blood showed markers similar to those that have lupus, whereby the immune system fights against your body even when there is no infection, its as if they still think the cancer is in my body. Plus, I am low on vitamin D, well I don’t get out much Doc. He tries to convince me of going back to Queen’s hospital but I’m reluctant to go only because of the way the junior doctors had treated me but he says that Queen’s is the best place for me and he will have a senior team look after me and if it is the case that I am there for more than one week he will personally arrange transport for weekends at home and back again. I’m not sure.

May 2022 – Purgatory

Have you ever wondered what exists between this life and the next? When your soul leaves your body and travels to another place. What is it? Where is it? If you’ve read the book The Midnight Library where a middle-aged woman, by the name of Nora Seed, decides to take her own life because she believed she had squandered every opportunity the universe had given her. A failure in her own eyes; she imagined herself being a successful swimmer or musician, a great philosopher, a wonderful spouse, a globe trotter, and a glaciologist (google it) none of which she aspired to. She even saw herself as a failed cat owner – who died, which may have been the straw that broke the camel’s back.

Soon after taking her own life, she’s transported to a place where beyond the immediate thick fog was a building no bigger than a small church or a Tesco Express. As she walked towards it she saw a large wooden door with a grand-looking clock which stated it was midnight. She walked inside and the structure of the building has changed much like the Tardis (Dr Who) it’s much larger than what it seemed from the outside and is stacked full of books. As she travels deeper into the room she’s lost sight of the way she came in and she couldn’t find any signs of a way out. As she walks around she met a familiar face, Mrs Elm, the Librarian from her middle school when she was younger; she had a strong bond with Mrs Elm during her childhood and she remained very fond of her as an adult too. Mrs Elm explains to her that this library only exists between life and death and the books on the shelves are of her. Each book is a variant of what she could have been having she made different decisions along her own timeline. She could be a swimmer in one book and part of a rock and roll band the next, but she could only exist there for a limited time and realised that it was a multiverse whereby she has taken host of a different Nora’s existing in a different timeline, each one with its own pleasures and misfortunes. And there was a book very unique to all the rest, it was The Book of Regrets; every regret Nora had in her life had been recorded in this book and it was so large and heavy it had to be placed on the floor to read it. The book was divided into chapters with each year of her life, a new chapter and as the book progressed the chapters grew larger and larger. By the end of it well; I’ll let you find that out for yourselves. However, it is said that the setting and person you meet during your time in Purgatory will differ.

For me, I imagine my ‘Librarian’ would be Fiona Tyrell possibly the first person who saw any potential in me. Someone I wanted to do good by and when she left my world began to implode. We would be in either Poppins where we went for coffee or the Waterstones in the town centre, which has a coffee shop and a nice seating area inside. I think I may have visited it when I was in ICU. I would tell Fiona that I missed her and I wish I stayed in touch. She was a mother figure to me that took a great interest in my personal life, she saw potential in me when others thought I wouldn’t amount to anything, and she knew of the demons I was fighting. She also knew I was very unhappy with my home life, especially the pressures of having an arranged marriage which my mum and dad fought over. That the alcoholism was a cry for help and the debts accumulated from drinking, smoking, gambling and retail therapy all of which blocked out the fact of not wanting to be home almost buried me in an early grave. I would have liked to have become a writer or a hockey player or at least to have gone to university. Sadly I hadn’t had the confidence to do the former and pressures from family and the guilt they made me feel prevented me from doing the latter. I wouldn’t say that I was depressed; I was just very, very unhappy. I never thought to take my own life, like Nora, only till recently when I was given the bad news.

I’ve agreed to go back to Queens hospital on the condition that I’m looked after by a different and more senior team. Dr Zandi agreed to this and A bed was made available rather quickly after we had spoken on the phone. When I arrive I sat in my chair, beside my hospital bed, looking around the room at the other patients; I can’t help but think that they could be a variant of me. Chris is laid opposite me severely disabled unable to speak and completely immobile he can only make gestures with his face when speaking to the Nurse as they second guess what he is trying to say. Dilip was the only other person in the ward, laid next to the window, he had been transferred from Watford General after experiencing some numbness in his hands and fingers, and muscle fatigue in his legs over a period of about a week or so progressively getting weaker and weaker. He walked across the road from his home into Watford General A&E and then he collapsed at the entrance. He was there for over 2 weeks before being transferred to Queen’s and at that time he couldn’t feel anything from the neck down. All I could imagine was him lying there in between the sliding doors bumping into him whilst trying to close and then the staff rushing towards him. He had suffered a stroke and his nervous system had shut down, while he waited for it to reboot his bloodwork showed a rare protein, which had only been found in 3 other people in the world, was the cause of the stroke. In highly stressful environments this protein flares up and causes his nervous system to shut down. By the time he arrived in Queens Dilips was able to move his arms and neck so he was getting better, albeit very slowly. It was fascinating to see the amount of Senior and Junior Doctors who wanted to study Dilip. It’s fair to say that both of them needed a lot more attention than I did. I couldn’t help to feel that the three of us could pose as a de-evolutionary picture of man and if you were to take parts from each of us you couldn’t complete Frankenstein. We were broken and labelled ‘not fit for purpose’ and yet we had people around us telling us that we were going to be OK.

I met with Dr Zandi and a number of Senior Doctors soon after I arrived, he introduces each one and mentions they will be looking after me during my stay. I was already warned that I may be in for a while so I’ve made provision to have enough stoma bags, etc. to see me through for at least a week. We also agreed that if I’m here any longer than a week then I’ll be allowed to go home on the following weekend and come back all through the NHS Transport service. And, as before, I arrived on a Friday and nothing happened apart from a physical examination to see if my nerve damage had deteriorated since the last time I was there.

The first night was agony, some fool of a Doctor decided to change the times of my medication even though I had given them the dosage and the times but they thought they knew better. I’m having hot flushes in the evening and flashbacks to a time when I was in isolation with staph. My mind fractured from before, creating images of me on a hospital bed inside a dark tunnel with a strip light above me running parallel to my body barely able to light up the surrounding area above. A sound could be heard of a train hurtling towards its next destination, screeching against the rails, shaking the foundations above me causing dust to fall from the ceiling onto me. There is a howling noise coming from afar which I find later that it’s an echo of my own anguish of being in this amount of pain. The oxygen mask feels like a mussel growing tighter against the elastic around the side and back of my head. All the while I’m unable to move from my bed, I’m not strapped down but my body will not correspond to my brain’s demands. I can’t tell whether I’m underneath Temple Station or in the Upside Down.

The next day I’m in the MRI only this time I’m given a light sedative to ease my mind to help with the claustrophobia, the team are talking to me the whole hour I’m in the machine and I’m able to get through the entire procedure without any issues. The day after a lumbar puncture everything is going smoothly and I’m visited by Junior Doctors wanting to make a case study of me, they really know how to make a guy feel special. I met with the Physio the day after who gave me some light exercises which will help with the fused muscles on my ankle and the shortened muscles in my calf. I’m not cramping up as much as I use to and I’m getting more flex in my ankle almost every day. It’s a completely different vibe and atmosphere than the last time I was at Queen’s, I’m in a different ward and the staff are so nice. Each night I would ask the Nurses to deliver the doses of my painkillers two hours ahead of schedule and each time they obliged.

By the end of the week I was done and on my way home, albeit I arrived at 2 am and all that was left was to wait for the results. I was confident that they would find something as they did with Dilip although not so rare as they said it could be a multitude of things like inflammation of the nerves, cancer eating away at the nerve roots or damage to the sciatic nerve. I was proud of myself for getting through that week, mentally, because there were times I wanted to discharge myself. I hate hospitals and they seem to hate me too but once I let go I actually enjoyed it. And maybe that is something I needed to experience to get over my fear of hospitals, to let go of things that are beyond my control and just go with the flow.

By the end of the month, Dr Zandi called to say the results are in and although there are signs of progressive nerve damage to the roots the extent of the damage cannot be found through tests alone therefore, he doesn’t have the entire picture of what is going on inside of me and we may never know the extent of the damage. He then went on to explain the common issues that come with the type of nerve damage I had been diagnosed with; all of which I knew of but nonetheless I was glad that it wasn’t all in my head. He goes on to tell me that he and his colleagues believe the nerve damage was caused during the surgery, the Surgeon could have nicked a nerve or nerve group and to find the nerve(s) affected is like finding a needle in a haystack, therefore, the way forward is through physio and pain management. In essence, I will be like this for the rest of my life.

There was an awkward silence after, my brain was still trying to compute what he had said. I was so confident they would find something, that they would give me a pill and all this suffering would be over but no, God was not on my side – as I felt abandoned, in limbo. I asked him to go over the results one more time as I thought I must have missed the part when he should have said “we found the problem” and “the solution is……” but no, there was no cure. The days that followed were filled with hopelessness and procrastination to a level which I had never experienced. Was I depressed or just feeling sorry for myself? And then, one weekend, while the kids played Minecraft on their Xbox in the living room and my wife dancing to 90’s hitlist on her Alexa, in the kitchen, I’m sat on the edge of my bed wanting it to be over, crying, sobbing visualising my own funeral in my head and going over my will and funeral cover to make sure it had all the information needed for a seamless transaction. I wanted it to end, the suffering, the pity, the fact I would dose up on painkillers just to get out of bed, every morning. I mean what the F*CK! Where was my ‘happy ever after’? What did I do to deserve this? Why is God so cruel??

June 2022 – Trauma

Recently I saw a news article about trauma. The reporter was talking to some of the survivors of the Hillsborough (football) disaster. It was a harrowing and detailed account of when Sheffield Wednesday hosted Liverpool FC, in the FA Cup semi-final in 1989. Due to public transport delays, many Liverpool fans were running late and were anxious to get to their seats as quickly as possible. So many people gathered at the entrance and rushed towards the turnstiles to try and get to their seats. Having so many people trying to squeeze their way through the turnstiles and then the narrow main tunnel leading into the stadium caused a huge bottleneck. As the match continued to be played, supporters tried to squeeze through and people spilt into the stands causing the fans nearest to the front to be pinned against the metal-wired fence, which was designed to prevent anyone from coming onto the pitch. As the pressure grew from more and more people trying to squeeze through, the crushed barriers that were cemented down snapped. 97 people lost their lives, the youngest being 10 years of age.

Some fans who attended the match at Hillsborough went to Paris, France in May of 2022 where Liverpool played Real Madrid in the Champions League final. The match was delayed due to an incident whereby ticketless Liverpool fans tried to push past the barriers and force their way in to watch the match – although this has been contested by many Liverpool fans and Charities. Nonetheless, the surviving fans mentioned that shock and anxiety followed soon after the Hillsborough disaster. For some, it was months if not years later when they started to experience depression and other mental health issues. A psychiatrist said it is very common for the minds (of the survivors) to block out scenes and emotions due to the trauma only to resurface much later. Many of the fans have only been able to speak about their mental health due to experiencing the most recent event. As if part of their memories were reignited by a survival instinct buried deep in their subconscious. The report went on to say that many of the fans who survived the initial event thought of committing suicide and it also found that some supporters, from the Hillsborough disaster, took their own lives much later, which has not been accounted for in the initial findings. I can also consent to the finding of this report, having experienced this recently. I’ve been experiencing flashbacks to a time when I was in the hospital shortly after the surgery. And, NO! It wasn’t the smell of Dominos that reignited those memories.

After being told that I may not be able to walk again and that I would be confined to a wheelchair and a zimmer frame to help me get around I found myself relieving the entire cancer journey once more. Looking over it with a fine tooth comb to identify where I may have triggered the sequence of events that followed. Was it vaping? Was it the overindulging ‘Eating Out to Help Out’ scheme? Could it be related to my alcoholism during my 20s? Was it even the healthy foods and supplements I was taking when I started my health kick two years prior? I found myself down a deep rabbit hole without an end in sight. A multiverse of opportunities that I could have changed from my childhood to now which could have prevented all this heartache and struggle for me and my family. These questions only seem to enter my mind when I’m in bed tossing and turning trying to get some sleep, regardless of what time I go to bed and regardless of how tired I am. I battle with my mind on a nightly basis when I have the urge to kill myself. It seems easy to fill out the column titled ‘reasons to die’; the suffering would end, and my children would be free of looking after me – having to put up with a cranky and senile human being, my family would stop tip-toeing around me, and I’ll be able to ask God why he did this to me before he pulls the lever to open up the trap door beneath me plunging me into the fiery depths of hell. But, I have to remind myself that God works in a mysterious way and that this could be a sign to live my life with more meaning and purpose. I remain patient in the belief that He will come to me and tell me what it is that I am meant to do. I just hope my struggles mean that my children or siblings could be spared.

As it has now been over a year since my leave of absence from work I’m invited by my workplace to speak with the Occupational Nurse from AXA. It’s standing protocol but it’s not something I’m looking forward to. I know I have nothing to hide, otherwise, why would I be writing this blog, but I also know that I will need to sign off on giving them permission to see my medical notes. I’m sitting down, on a video call, with a lady called Alisa. She’s really nice and puts me at ease straight away. She explains that process to me and she lets me tell my story as best as I can so she can have the full picture and which should corroborate with my medical notes. By the end of the meeting, she reassured me that all that I am going through is ‘normal’ and that I should listen to my family when they tell me that it’s going to be okay. She’ll be coming back to me with the final version of the notes and the summary that they’ll present to my line manager advising Jen of their recommendations.

I have a hospital appointment booked with Dr Zandi at the Lister Hospital, Stevenage. I’m still grieving and making excuses not to go out. What more can he tell me that he hasn’t already? I can’t take any more bad news and so I decide not to attend. I’m spending almost all my time in bed watching Netflix or Youtube in an attempt to take my mind off my own issues and disappear into someone else. But my mind keeps pulling me into the script, creating a character in every scene where I play the victim in every scenario. I guess that’s what you get for having an overly active imagination. Even my Instagram feed is frustrating me; motivational garbage like ‘today’s pain is tomorrow’s power’ and ‘trust the timing, everything happens for a reason’. It’s the same horse shit I used to pedal when I was a team manager. I actually believed it once upon a time.

It’s time I faced up to reality and accept that these are the cards given to me and rather than fight against the current I need to accept it and go with the flow. I’ve decided to invest in a wheelchair. I know – I know – I said that I wouldn’t do it because it may make me lazy but there’s no alternative. To help me get around and for the NHS Transport team to get me to my appointments I’ve started to look for a wheelchair. Having looked online there are so many to choose from. There are self-propelling wheelchairs with a variety of different colours, makes and models; with optional extras of different seat cushions, backrests, tyres to suit all terrains, and leg rest and cup holder sizes to suit every Thermos possible. It’s easy to get lost in all the luxury items but if I’m sat in it for the rest of my life then I better make sure it lasts and it’s comfortable. Then, there is the price; some of them go into the thousands of pounds made of some special lightweight alloys and tyres with thread that is straight off the moto GP rally cars. It would be great to have the Quickie Nitrum wheelchair but am I really going to get around the bakery aisle at the local M&S any quicker than a bulk standard wheelchair? Possibly not, but at least I’ll be getting around in style. Sadly my budget doesn’t stretch that far so I go for a mid-range lightweight wheelchair that is as inconspicuous as my beloved Honda Jazz. Reliable and affordable with a few extras because I ‘just gotta have it’.

As I await the delivery of my wheelchair I meet up with my Dietitian who recommends that I switch up my meal plan. It’s remained very beige since I was released from the hospital and I’m still drinking the AYMES nutritionally-balanced milkshakes, which I order by the crate. She wants me to introduce some fruits and vegetables but I will need to keep an eye on the amount of fibre I’m eating as it can make my stools more solid and the veg may not be digested fully due to the short colon I have which is attached to my stoma. I’m also wary of the fact that any greens will make my stoma erupt more often and cause a horrid stench which can’t be blamed on the children. I have to confess it took me by surprise the quantity of carbs and sugar I was consuming led to the enormous waistline that had suddenly popped out from under my t-shirts. A few bits of broccoli wouldn’t go a miss.

My GP is also keen to see me after receiving a letter from Queens hospital regarding my test results. She’s disappointed to see that all tests they were able to do on me didn’t find the cause nor the solution for the nerve damage but she too understands the risk of opening me up again, it’s not worth taking so she devises a plan for my rehabilitation. I’m already experiencing the long-term side effects of being on the gabapentin and the long tec; the gabapentin is causing inflammation to my lower back (right side) and adding to the long tec is increasing my sensitivity to pain, not to mention the short term memory loss, confusion, nausea and right foot twitching in frustration. Imagine if the hand from the Adams Family was your right foot, having a mind of its own pointing, tapping morse code, playing charades and never getting the answer right- but the benefits outweigh the difficulties I would face without the medication so it’s a no-brainer.

I still ask myself – how did it come to this? Why am I unable to get past this feeling of loss and regret? I’m becoming ‘embittered’ as I feel I have no meaning in life or losing sight of it. I spend my nights chasing shadows, dreaming of burying the former version of myself. As I stand over looking down into the casket I see what I use to be with, messages from people I used to know. Comments about the person I was before; smart, forthright, handsome, modest, hard-working, Mr MO-tivator, and a great dad – are just some of the comments I can see among the flowers and the candles below a faded stoned sigil of remembrance with a small plated plaque with embossed writing upon it:

Mohammad Samad

1984 – 2021